Dying at life's beginning

Description

Background
The disclosure of a diagnosis during pregnancy of a fetal congenital malformation incompatible with life normally comes completely unexpectedly to the parents. While a body of international literature has considered the topic, there is little direct evidence generated in Switzerland. This study aimed to illuminate contemporary treatment associated with such a diagnosis regardless of whether parents make the decision to terminate or continue the pregnancy. Method
A qualitative design was used with data being collected by semi structured interviews then subjected to a thematic analysis. Results
Sixty one interviews were undertaken with 32 affected parents and 29 health professionals. The theme of “temporality” dominated the results with four main time points: diagnosis, decision, birth/death and afterwards identified by the professionals. Underpinning this were six major themes generated from parents which extended across the span from receiving the diagnosis until the interview: shock, choices and dilemmas, taking responsibility, still being pregnant, forming a relationship with the baby, moving on. Conclusions
Care varied according to region but was as sensitive as possible, attempting to give parents space to accept their loss but fulfilling all the legal requirements. A gap exists between diagnosis and decision with participants feeling pressured to make decisions regarding continuing or terminating their pregnancy although health professionals’ testimony indicated otherwise. A major gap manifested following the decision with no available palliative care packages. During the birth/death of the baby, care was sensitive and appropriate but another gap manifested following discharge from hospital, depending on insurance cover.