title: Impact of a pediatric palliative care program.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  When palliative care was offered either at hospital or home, palliative care occurred more frequently at home.
authors.affiliation: Krankenhaus Barmherzige Brüder, University of Regensburg, Germany. jwolff@mdanderson.org
authors.forename: Johannes
authors.initials: J
authors.lastname: Wolff
authors.forename: Rhonda
authors.initials: R
authors.lastname: Robert
authors.forename: Andre
authors.initials: A
authors.lastname: Sommerer
authors.forename: Marlene
authors.initials: M
authors.lastname: Volz-Fleckenstein
mesh_terms: D002648:Child; D002662:Child Health Services; D003258:Consumer Behavior; D005858:Germany; D018575:Home Care Services, Hospital-Based; D006801:Humans; D010166:Palliative Care; D010290:Parents; D015397:Program Evaluation; D011788:Quality of Life; D012189:Retrospective Studies