Impact of a pediatric palliative care program

The question of where a child should die at home or in the hospital has been a subject of recent debate. We instituted a palliative care program with advanced end-of-life planning and hypothesized that a significant number of families would prefer that their child be at home rather than at a hospital at the end-of-life and that the overall quality of care would thereby improve.

Study design was single group, retrospective parent report of satisfaction with a new palliative care program. Participants were the caregivers, primarily parents, involved in the palliative care program. They completed a satisfaction survey, and their choice of environment at the end-of-life was noted.

Fifty-one families experienced the death of a child between 2001 and 2003. Most of the patients had had cancer (n = 29, 57%), and the most frequent non-oncologic patient had had cystic fibrosis. The parents (caregiver) participation rate was 69%. After a palliative care program was instituted, 69% of families preferred their child to be at home at the end-of-life, compared with 18% before the program was instituted (P = 0.0049 chi(2)-test). The satisfaction with the medical services was high (very good, 26; good, 4; satisfying, 2; acceptable, 3; deficient, 0; unacceptable, 0), independent of locale at time of death.

When palliative care was offered either at hospital or home, palliative care occurred more frequently at home.