Values clarification: Eliciting the values that inform and influence parents’ treatment decisions for periviable birth

Abstract

BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL)., OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL., METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) “Agreed/disagreed” with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define “QOL” and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12., RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated “Impact on Your Physical/Mental Health” (average 5.6) and IOs rated “Financial Concerns” the highest (average 6.6), both groups ranked “Financial Concerns” as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that “Any amount of life is better than no life at all” (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause “Too much suffering” for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase “QOL”. Although the majority described a good QOL in terms of emotional well-being (eg “loved”, “happy”, “supported”), a poor QOL was described in terms of functionality (eg “dependent” and “confined”). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL., CONCLUSION: The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support. Copyright © 2019 John Wiley & Sons Ltd.