[Dying at Life's Beginning].


Aim: When parents-to-be are faced with a terminal prenatal diagnosis, they are confronted with the decision either to continue the pregnancy or to terminate it at an advanced stage. This difficult decision is intimately affected by the experience of the inevitability of loss, and ethical dilemmas posed in this usually completely unexpected situation. Studies indicate that perinatal child loss due to lethal foetal anomalies is a major life event and a source of serious psychological issues, which can last for many years after the experience. Moreover, it has been shown that care for bereaved parents, if guided by their needs, can ease their burden, regardless of whether they choose to end or continue the pregnancy. The aim of this study is to inspect current practices of counselling and support of affected families and develop practical guidelines for health and social professionals involved. Methods: A sample of 32 parents in the German-speaking part of Switzerland was investigated between December 2012 and March 2014. Semi-structured problem-centred interviews were conducted, transcribed verbatim and thematically analysed. Results: 4 main time periods and 6 themes were identified by participants ranging from diagnosis until birth: "shock", "choices and dilemmas", "taking responsibility", "still being pregnant", "saying goodbye/letting go" and "planning the future". However, findings reflect critical points of care and showed gaps not only between emphasising time periods but also between affected parents' and involved professionals' views. This article reports the findings from the parents. Conclusion: This study provided new insights into parental responses when they are confronted with a fatal prenatal diagnosis. The results contribute towards rethinking current practices in midwifery and other healthcare during pregnancy, birth and puerperium as well as the palliative care of the child.

DOI: 10.1055/s-0042-116316

Cite this paper

@article{Frank2017DyingAL, title={[Dying at Life's Beginning].}, author={Franziska Frank and Franziska Maurer and Jessica Pehlke-Milde and Valerie E M Fleming}, journal={Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany))}, year={2017} }