title: Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice?
abstract: BACKGROUND
  Current options for location of end-of-life (EOL) care for children with cancer include home, hospital, and freestanding pediatric hospice (FSPH). However, access to these options varies greatly depending on geographical location. We aimed to determine bereaved parent and clinician preferences for location to EOL care and death.
  
  
  METHODS
  We administered questionnaires to 75 bereaved parents (response rate 54%) and 48 pediatric oncology clinicians (response rate 91%) at a large teaching hospital. Main outcome measure was parent and clinician ranking for preferred location of EOL care and death if given the options of home, hospital or FSPH.
  
  
  RESULTS
  Majority of parents and clinicians ranked home as their first choice for EOL care (70.2% and 87%, respectively) and death (70.8% and 89.1%, respectively). Compared to clinicians, parents gave a higher ranking to hospital (P < 0.01) and lower ranking to FSPH (P < 0.01) as the preferred location for EOL care and death. Congruence between actual and preferred location of EOL care was more likely when a palliative care team was involved (P < 0.01) and less likely for children with haematologic malignancies (P = 0.03).
  
  
  CONCLUSIONS
  Parents and clinicians prefer home as the location for EOL care and death for children with cancer. Hospital based palliative care is a preferred alternative if home is not desired. FSPH is a relatively recent phenomena and further research needs to be directed towards understanding its cost benefit in comparison to home and hospital-based EOL care.
authors.affiliation: Division of Hematology/Oncology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Canada; Division of Palliative Medicine, Department of Medicine, Southlake Regional Health Centre, Newmarket, Canada.
authors.forename: Alisha
authors.initials: A
authors.lastname: Kassam
authors.forename: Julia
authors.initials: J
authors.lastname: Skiadaresis
authors.forename: Sarah
authors.initials: S
authors.lastname: Alexander
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
mesh_terms: D000293:Adolescent; D001293:Attitude to Death; D002648:Child; D002675:Child, Preschool; D002755:Choice Behavior; D005260:Female; D005500:Follow-Up Studies; D006699:Home Care Services; D017051:Hospice Care / Q000458:organization & administration*; D006761:Hospitals; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D010290:Parents / Q000523:psychology*; D010820:Physicians / Q000523:psychology*; D011379:Prognosis; D011788:Quality of Life; D012111:Residence Characteristics / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*
keywords: end of life care; paediatric oncology; palliative care; quality of life