Objective: This study describes the process and population involved in pediatric advance care
planning at one Midwest medical center. The outcomes and the parents' perceptions of this
planning are also discussed.
Methods: Pediatric patients with advance directives were identified from ethics consultations
records. Information about the type of advance directive, the patient's medical condition
and care received was obtained from the medical records. Parents of the children were
then contacted and interviewed in regard to the advance care planning process done for their
child. The interviews were audiotaped and transcribed. Transcribed interviews were reviewed
and themes were identified.
Results: Seventeen children from 16 families were included in the study. Almost all of the
patients had progressive disorders other than cancer. Of the 17 children, 9 are deceased, 7 died
at home and 2 died at a hospital. Eight of the children's advance directives were followed
during the dying process, while 1 was not. Thirteen parents were interviewed. Twelve stated
that the process of advance care planning benefited their children and their family. Rarely,
individuals in the community raised concerns about the child's advance directive.
Conclusions: Even though the topic of their child's death is difficult, the majority of the interviewed
parents found the advance care planning process for the child helpful because it
assured the best care for the child, including preserving their child's quality of life and avoiding
unnecessary suffering.
