Decision making and end-of-life care in critically ill children

1) To comment on the medical literature on decision making regarding end-of-life therapy, 2) to analyze the data on disagreement about such therapy, including palliative care, and withholding and withdrawal practices for critically ill children in the pediatric intensive care unit (PICU), and 3) to make some general recommendations.

All papers published in peer-reviewed journals, and all chapters on end-of-life therapy, or on conflict between parents and caregivers about end-of-life decisions in the PICU were retrieved.

We found three case series, three systematic descriptive studies, two qualitative studies, four surveys, and many legal opinions, editorials, reviews, guidelines, and book chapters. The main determinants of end-of-life decisions are the child's age, premorbid cognitive condition and functional status, pain or discomfort, probability of survival, and quality of life. Risk factors in persistent conflict between parents and caregivers about end-of-life care include a grave underlying condition or an unexpected and severe event.

Making decisions about end-of-life care is a frequent event in the PICU. Children may need both intensive care and palliative care concurrently at different stages of their illness. Disagreements are more likely to be resolved if the root cause of the conflict is better understood.