Ethics and clinical aspects of palliative sedation in the terminally ill child

Abstract

More than 50,000 children in the United States die every year. Causes of death in children differ signifi cantly from causes of death in adults-and palliative careguidelines and practices that may be appropriate for adults may not be appropriate in children. For children suffering terminal illness, the end-of-life period-defi ned as the average period between the realization by parents that their child cannot be curedand the child’s death-lasts an average of 9 weeks. Physician realization that a child cannot be cured precedes the parental realization by an average of 100 days. During the fi nal 63 days, health care decisions evolve from those with goals of treatment and cure to those with goals of comfort and palliation. Grief experienced after the death of a child has been shown to have profound adverse effects on mental and physical health of the parents for more than 9 years after the death of a child, and parental perceptions of child distress at end of life are correlated with longer duration of parental distress. Evidence shows that effective palliative care has an important role to play not only in the relief of distress of the child, but in the future well-being of the parents.