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

Abstract

BackgroundEach 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.ObjectiveTo 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.MethodA 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.ResultsA 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.ConclusionsPediatric 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.