title: Easing of suffering in children with cancer at the end of life: is care changing?
abstract: OBJECTIVE
  In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life.
  
  
  METHODS
  Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort).
  
  
  RESULTS
  In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002).
  
  
  CONCLUSIONS
  Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.
authors: Department of Pediatric Oncology, Dana-Farber Cancer Institute, 44 Binney St, SM-205, Boston, MA 02115, USA. Joanne_wolfe@dfci.harvard.edu
authors: Joanne
authors: J
authors: Wolfe
authors: Jim F
authors: JF
authors: Hammel
authors: Kelly E
authors: KE
authors: Edwards
authors: Janet
authors: J
authors: Duncan
authors: Michael
authors: M
authors: Comeau
authors: Joanna
authors: J
authors: Breyer
authors: Sarah A
authors: SA
authors: Aldridge
authors: Holcombe E
authors: HE
authors: Grier
authors: Charles
authors: C
authors: Berde
authors: Veronica
authors: V
authors: Dussel
authors: Jane C
authors: JC
authors: Weeks
mesh_terms: D002648:Child; D015331:Cohort Studies; D006801:Humans; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care / Q000379:methods* / Q000639:trends*; D016414:Resuscitation Orders; D013315:Stress, Psychological