Dying at life׳s beginning: Experiences of parents and health professionals in Switzerland when an 'in utero ' diagnosis incompatible with life is made. (March 2016)

• Record Type: Journal Article
• Authors: Fleming, Valerie; Iljuschin, Irina; Pehlke-Milde, Jessica; Maurer, Franziska; Parpan, Franziska
• Is Part Of: Midwifery. Volume 34(2016)
• Page Start: 23
• Page End: 29
• Publication Date: 2016-03
• Subjects: Fetal congenital malformation -- Thematic analysis -- Temporality -- Gaps; Midwifery -- Periodicals; Midwifery -- Periodicals; Sages-femmes -- Périodiques; Midwifery; Periodicals; Electronic journals; 618.2005
• DOI: 10.1016/j.midw.2016.01.014
• Languages: English
• ISSNs: 0266-6138

Abstract

Abstract: Objective: The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of it comes from the United States and little has been generated from Europe. This study aims to illuminate the contemporary treatment associated with such diagnoses, regardless of whether parents decide to terminate or continue the pregnancy. Design: a qualitative design was used with data collected by semi-structured interviews and subjected to a thematic analysis. Setting: the research was conducted in the German speaking areas of Switzerland with data collected from participants in places of their choice. Participants: 61 interviews were conducted with 32 parents and 29 health professionals. Findings: the theme of 'temporality' identified four main time points from the professionals: diagnosis, decision, birth/death, and afterwards. However, in contrast to these, six major themes in this study, primarily generated from parents and extended from receiving the diagnosis until the interview, were identified: shock, choices and dilemmas, taking responsibility, still being pregnant, forming a relationship with the baby, letting go. Although there was concurrence on many aspects of care at the point of contact, parents expressed major issues as gaps between the points of contact. Conclusions: care varied regionally but was as sensitive as possible, attempting to give parents the space to accept their loss but fulfil legal requirements. A gap exists between diagnosis and decision with parents feeling pressured to make decisions regarding continuing or terminating their pregnancies although health professionals' testimonies indicated otherwise. A major gap manifested following the decision with no palliative care packages offered. During the birth/death of the baby, care was sensitive but another gap manifested following discharge from hospital. Highlights: Parents felt pressured to decide whether or not to continue their pregnancies. Advice for the women was not always consistent. No special palliative care packages were offered. During the birth/death of the infant, care was always sensitive and appropriate. Following discharge from hospital no clear pathways of care were in place.