Communication about life-sustaining therapy: insights from the Adaptive Leadership Framework

Effective provider and caregiver communication is central to quality care during treatment for life-threatening illnesses. The study aim was to analyze communication patterns between providers and a parent of an infant with a life-threatening disease using the Adaptive Leadership Framework, which is an activity that involves mobilizing others to adapt to a difficult situation.

A secondary analysis was conducted on one case using 23 interviews with providers and mother of an infant diagnosed with Hurler's syndrome. The interviews focused on decision-making challenges in regard to the infant's treatment and were conducted over a 1-year period (pre-transplant, study entry, monthly, after a life-threatening event or substantial change in treatment and at 1-year post enrollment). Content analysis was used to identify and categorize communication patterns using concepts from the Adaptive Leadership Framework.

Infant illness events and parent-provider caregiving were chronicled across a 1-year trajectory. Despite the life-threatening nature of Hurler's disease, the parent and providers did not discuss palliative care or end-of-life. The parent sought direction and answers from the providers. The Adaptive Leadership Framework suggested how communication approaches were often mismatched with the needs of the parent.

The results of the study accentuate the need to improve communication between provider and parents about end-of-life for their child. Adaptive Leadership illuminates how providers can influence a parent's behavior when facing a challenging situation. This study suggests that Adaptive Leadership is a useful framework to guide research about healthcare communication in dealing with challenging issues.