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

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

Meyer EC; Ritholz MD; Burns JP; Truog RD

Pediatrics

2006

Child; Humans; infant; Parent-Child Relations; Questionnaires; Professional-Family Relations; Communication; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; PedPal Lit; decision making; infant; Newborn; Parents/psychology; Intensive Care Units; Palliative Care/psychology; Terminal Care/psychology

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.

2006

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