End-Of-Life Care for the Dying Child: What Matters Most to Parents

Abstract

OBJECTIVE: To identify and define the dimensions of pediatric end-of-life (EOL) care that are important to parents. POPULATION: Parents of children who died as a result of an illness, chronic condition, or birth defect while receiving EOL care in hospital or at home in 2004 and 2005. DESIGN: Qualitative data derived from semi-structured and focus group interviews were analyzed using content analysis. SETTING: A large pediatric hospital located in the Midwestern United States. RESULTS: Seven dimensions of pediatric EOL care were identified--respect for the family's role, comfort, spiritual care, access to care and resources, communication, support for parental decision making, and caring/ humanism. CONCLUSION: There are clear dimensions of pediatric EOL care that are important to parents; these can be defined in terms of health care provider behaviours, some of which require balancing seemingly conflicting objectives. Developing a measurement tool based on these dimensions would help to improve the quality of pediatric EOL care.