Communication and End-of-Life Decision Making about Death with Children who have Terminal Cancer: The Social Worker’s Perspective

Purpose: The purpose of this study was to determine how parents address communication and decision making about death with their terminally ill child from social workers who work with these families. Methods: To add to the existing limited research studies on communication about death and end-of-life care decision making, the researcher conducted a qualitative study consisting of six interviews with social workers in a large, Midwestern pediatric hospital. The data was analyzed using thematic clustering. Results: The qualitative study focuses on two themes: discussing death with a terminally ill child and decision making. The researcher found that, with regards to discussing death with a terminally ill child, that parents had several reasons for either not telling their child about death or telling their child. The researcher also found that there were varying responses to whether or not parents experienced regret about not talking to their child about death and that most children would like to talk to their parents about death. In addition, the researcher found that, with regards to decision making, that parents are generally the principle decision makers. However, the researcher found that a child’s input in the decision-making process depends on the child’s age and development. The researcher also found that parents and children may disagree about end of life decisions, and when this happens, there are several tools in place to help a family reach a compromise. Implications: This study suggests that further research is needed on end-of-life decision making in order to address the emerging themes found. Social workers need to understand how families address end-of-life decisions in order to better help the families they serve