Improving the quality of end-of-life care in the pediatric intensive care unit: Parents' priorities and recommendations

OBJECTIVE. Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS. This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS. Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS. Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.