Peer-reviewed article

Healthcare provider's perceptions of family values when making end-of-life care decisions for their children: developing and implementing a survey tool.

Sivakumar N, Kukora S, Ginwalla C, Lakshminrusimha S, Rosenthal J · 9 Jul 2026

Abstract

Background Healthcare providers help families navigate end-of-life care decisions in the neonatal intensive care unit (NICU) and pediatric intensive care unit (PICU); however, limited studies exist regarding what values providers perceive families utilize when in these situations. Objective To evaluate providers' perceptions of values that families considered when making end-of-life care decisions for their child. Design Develop a novel survey tool to understand providers' perceptions of values families considered when making end-of-life care decisions for their children and distribute the survey tool to providers in a single quaternary care children's hospital within a university hospital. Methods The novel survey tool was composed of survey questions based on existing literature, revised based on expert feedback, then iteratively refined through cognitive interviews. Preliminary data from this survey tool was collected from eligible participants at one study site. Results Feedback from nine experts and six cognitive interviews resulted in a 21-item survey. Ninety-five participants completed the survey. Participants reported that the relationship between the family and child, the child's quality of life, and the child's prognosis or disease course were most important to the family. Conversely, finances and prior experiences were ranked least important. Conclusions A novel survey tool was created to identify the core values that families were perceived to favor by healthcare providers when making end-of-life care decisions for their children, as a means to improve end-of-life care discussions at the bedside. Pilot data suggests that providers may understand the values that families utilize, though may not understand how they prioritize them. Future studies comparing family and provider responses, with mirrored surveys, are necessary to create decision support tools and to improve provider education in end-of-life care decision-making.