Uncertainty at the Limits of Viability: A Qualitative Study of Antenatal Consultations

Author:

Kaemingk Bethany D.12,Carroll Katherine3,Thorvilson Megan J.2,Schaepe Karen S.4,Collura Christopher A.12

Affiliation:

1. Division of Neonatal Medicine,

2. Department of Pediatric and Adolescent Medicine and

3. School of Sociology, College of Arts and Social Sciences, Australian National University, Canberra, Australia

4. Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, Minnesota; and

Abstract

BACKGROUND AND OBJECTIVES: Antenatal consultation between a neonatologist and expectant parent(s) may determine if resuscitation is provided for or withheld from neonates born in the gray zone of viability. In this study, we sought to gain a deeper understanding of uncertainties present and neonatologists’ communication strategies regarding such uncertainties in this shared decision-making. METHODS: A prospective, qualitative study using transcriptions of audio-recorded antenatal consultations between a neonatologist and expectant parent(s) was conducted. Pregnant women were eligible if anticipating delivery in the gray zone of viability (22 0/7–24 6/7 weeks’ gestation). Over 18 months, 25 of 28 pregnant women approached consented to participate. Applied thematic analysis was used to inductively derive and examine conceptual themes. RESULTS: Inductive analysis of consult transcripts revealed uncertainty as a central theme. Several subthemes relating to uncertainty were also derived, including the timing of delivery, NICU course, individual characteristics (of physician, expectant parent(s), and fetus or neonate), and consequences of the decision for the expectant parent(s). Analysis revealed that uncertainty was actively managed by neonatologists through a variety of strategies, including providing more information, acknowledging the limits of medicine, acknowledging and accepting uncertainty, holding hope, and relationship building. CONCLUSIONS: Uncertainty is pervasive within the antenatal consultation for periviable neonates and likely plays a significant role in decision-making toward postnatal resuscitative efforts. Uncertainty complicated, or even paralyzed, decision-making efforts while also providing reassurance toward a positive outcome. Directions for future study should consider whether advanced communication training modulates the impact that uncertainty plays in the shared decision-making encounter.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology, and Child Health

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