title: Physician and parent perceptions of prognosis and end-of-life experience in children with advanced heart disease.
abstract: BACKGROUND
  Little is known about how physician and parent perspectives compare regarding the prognosis and end-of-life (EOL) experience of children with advanced heart disease (AHD).
  
  
  OBJECTIVE
  The study's objective was to describe and compare parent and physician perceptions regarding prognosis and EOL experience in children with AHD.
  
  
  METHODS
  This was a cross-sectional survey study of cardiologists and bereaved parents. Study subjects were parents and cardiologists of children with primary cardiac diagnoses who died in a tertiary care pediatric hospital between January 2007 and December 2009. Inclusion required both physician and parent to have completed surveys respective to the same patient. A total of 31 parent/physician pairs formed the analytic sample. Perceptions were measured of cardiologists and bereaved parents regarding the EOL experience of children with AHD.
  
  
  RESULTS
  Nearly half of parents and physicians felt that patients suffered 'a great deal,' 'a lot,' or 'somewhat' at EOL, but there was no agreement between them. At diagnosis, parents more often expected complete repair and normal lifespan while the majority of physicians expected shortened lifespan without normal quality of life. Parents who expected complete repair with normal life were more likely to report 'a lot' of suffering at EOL (p=0.002). In 43% of cases, physicians reported that the parents were prepared for the way in which their child died, while the parents reported feeling unprepared.
  
  
  CONCLUSIONS
  Both parents and physicians perceive suffering at EOL in patients who die of AHD. Moreover, parent expectations at diagnosis may influence perceptions of suffering at EOL. Physicians overestimate the degree of parent preparedness for their child's death.
authors.affiliation: 1 Department of Pediatrics, UCSF Benioff Children's Hospital , San Francisco, California.
authors.forename: Emily M
authors.initials: EM
authors.lastname: Balkin
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
authors.forename: Sonja I
authors.initials: SI
authors.lastname: Ziniel
authors.forename: Peter
authors.initials: P
authors.lastname: Lang
authors.forename: Ravi
authors.initials: R
authors.lastname: Thiagarajan
authors.forename: Shay
authors.initials: S
authors.lastname: Dillis
authors.forename: Francis
authors.initials: F
authors.lastname: Fynn-Thompson
authors.forename: Elizabeth D
authors.initials: ED
authors.lastname: Blume
mesh_terms: D000293:Adolescent; D000328:Adult; D001293:Attitude to Death; D001601:Bereavement; D002300:Cardiac Care Facilities; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006331:Heart Diseases; D017052:Hospital Mortality; D006776:Hospitals, Pediatric; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010820:Physicians / Q000523:psychology*; D011368:Professional-Family Relations; D011379:Prognosis; D011788:Quality of Life; D012189:Retrospective Studies; D019452:Terminally Ill; D055815:Young Adult