Ethical and Clinical Aspects of Palliative Sedation in the Terminally Ill Child
摘要
It is estimated that over 21 million children aged 0–19 years could benefit annually from palliative intervention worldwide (Friedrichsdorf and Bruera, Children (Basel). 5:120, 2018). In 2020, there were 34,190 deaths in the United States among children under the age of 17 (ChildStats: forum on child and family statistics. Child and Adolescent Mortality. Available at: ChildStats.gov. Accessed Aug 21, 2023). Causes of death in children differ significantly from causes of death in adults—and palliative care guidelines and practices that may be appropriate for adults may not be appropriate for children. For children suffering terminal illness, the end-of-life period—defined as the period between realization by parents that their child cannot be cured and 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 final 63 days, health-care decisions evolve from those with goals of treatment and cure to those with goals of comfort and palliation. The grief experienced after the death of a child has been shown to have profound adverse effects on the 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 the 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 also in the future well-being of the parents. This chapter discusses the ethical concerns regarding one aspect of palliative sedation (PS): continuous deep sedation (CDS).