Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations

Abstract

BACKGROUND AND OBJECTIVES To provide support to parents of critically ill children, it is important that physicians adequately respond to parents’ emotions. In this study, we investigated emotions expressed by parents, physicians’ responses to these expressions, and parents’ emotions after the physicians’ responses in conversations in which crucial decisions regarding the child’s life-sustaining treatment had to be made. METHODS Forty-nine audio-recorded conversations between parents of 12 critically ill children and physicians working in the neonatal and pediatric intensive care units of 3 Dutch university medical centers were coded and analyzed by using a qualitative inductive approach. RESULTS Forty-six physicians and 22 parents of 12 children participated. In all 49 conversations, parents expressed a broad range of emotions, often intertwining, including anxiety, anger, devotion, grief, relief, hope, and guilt. Both implicit and explicit expressions of anxiety were prevalent. Physicians predominantly responded to parental emotions with cognition-oriented approaches, thereby limiting opportunities for parents. This appeared to intensify parents’ expressions of anger and protectiveness, although their anxiety remained under the surface. In response to more tangible emotional expressions, for instance, grief when the child’s death was imminent, physicians provided parents helpful support in both affect- and cognition-oriented ways. CONCLUSIONS Our findings illustrate the diversity of emotions expressed by parents during end-of-life conversations. Moreover, they offer insight into the more and less helpful ways in which physicians may respond to these emotions. More training is needed to help physicians in recognizing parents’ emotions, particularly implicit expressions of anxiety, and to choose helpful combinations of responses.