Pediatric Nurses’ Perceptions of Obstacles and Supportive Behaviors in End-of-Life Care

Abstract

Background Each year 55 000 children die in the United States, and most of these deaths occur in hospitals. The barriers and supportive behaviors in providing end-of-life care to children should be determined. Objective To determine pediatric intensive care unit nurses’ perceptions of sizes, frequencies, and magnitudes of selected obstacles and helpful behaviors in providing end-of-life care to children. Method A national sample of 1047 pediatric intensive care unit nurses who were members of the American Association of Critical-Care Nurses were surveyed. A 76-item questionnaire adapted from 3 similar surveys with critical care, emergency, and oncology nurses was mailed to possible participants. Nurses who did not respond to the first mailing were sent a second mailing. Nurses were asked to rate the size and frequency of listed obstacles and supportive behaviors in caring for children at the end of life. Results A total of 474 usable questionnaires were received from 985 eligible respondents (return rate, 48%). The 2 items with the highest perceived obstacle magnitude scores for size and frequency means were language barriers and parental discomfort in withholding and/or withdrawing mechanical ventilation. The highest supportive behavior item was allowing time alone with the child when he or she has died. Conclusions Pediatric intensive care unit nurses play a vital role in caring for dying children and the children’s families. Overcoming language and communication barriers with children’s families and between interdisciplinary team members could greatly improve the end-of-life experience for dying children.