Family Conferences in Prenatal Palliative Care

Abstract

Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and similar to 1.2% are major malformations. After prenatal diagnosis, it is imperative to consider families' values and to support their decision-making process. Prenatal palliative care is a growing field mainly based on family conferences. The prenatal care setting is unique and differs from postnatal and adult care. There are no descriptions of family conferences in prenatal palliative care. The descriptions of themes that emerge from the prenatal care conference charts may guide professionals in this delicate task, and help determine the causes of suffering and identify family values before the birth of the infant. Aim: To perform a content analysis of medical records of family conferences and to describe the main themes observed during prenatal palliative care follow-up after the diagnosis of a life-limiting fetal condition. Design: This is a retrospective study of medical records of family conferences from a perinatal palliative care group, the GAI group, between May 2015 and September 2016. Setting/Participants: Families with estimated perinatal mortality >50% and eligibility for follow-up at our tertiary fetal medicine center were enrolled. We included women who participated in at least one family conference with the GAI group and who had given birth at the clinic or delivered at another center and returned for the postnatal family conference. Results: Fifty women met the inclusion criteria. Five main themes and 18 categories emerged from the charts and are described in detail. A model of follow-up in prenatal palliative care is proposed based on the themes and categories identified. Conclusions: This analysis may guide health professionals who seek to better identify family needs and values and organize follow-up during prenatal palliative care.