title: Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study.
abstract: BACKGROUND
  Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care.
  
  
  METHODS
  A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs.
  
  
  RESULTS
  All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days.
  
  
  CONCLUSIONS
  Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Kimberley
authors.initials: K
authors.lastname: Widger
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Dawn
authors.initials: D
authors.lastname: Davies
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Adam
authors.initials: A
authors.lastname: Rapoport
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Christina
authors.initials: C
authors.lastname: Vadeboncoeur
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Stephen
authors.initials: S
authors.lastname: Liben
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Amrita
authors.initials: A
authors.lastname: Sarpal
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Simone
authors.initials: S
authors.lastname: Stenekes
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Claude
authors.initials: C
authors.lastname: Cyr
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Lysanne
authors.initials: L
authors.lastname: Daoust
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Marie-Claude
authors.initials: MC
authors.lastname: Grégoire
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Marli
authors.initials: M
authors.lastname: Robertson
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Heather
authors.initials: H
authors.lastname: Hodgson-Viden
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Julie
authors.initials: J
authors.lastname: Laflamme
authors.affiliation: Lawrence S. Bloomberg Faculty of Nursing (Widger), University of Toronto; The Hospital for Sick Children (Widger, Rapoport), Toronto, Ont.; John Dossetor Health Ethics Centre (Davies), University of Alberta; Stollery Children's Hospital (Davies), Edmonton, Alta.; Departments of Paediatrics and of Family & Community Medicine (Rapoport), University of Toronto, Toronto, Ont.; Children's Hospital of Eastern Ontario (Vadeboncoeur), Ottawa, Ont.; Montreal Children's Hospital, McGill University Health Centre (Liben), Montréal, Que.; Children's Hospital London Health Sciences Centre (Sarpal), London, Ont.; Winnipeg Regional Health Authority (Stenekes), Winnipeg, Man.; Centre hospitalier universitaire de Sherbrooke (Cyr), Sherbrooke, Que.; Centre hospitalier universitaire Sainte-Justine (Daoust), Montréal, Que.; IWK Health Centre (Grégoire), Halifax, NS; University of Calgary (Robertson); Rotary/Flames House (Robertson), Calgary, Alta.; University of Saskatchewan; Royal University Hospital (Hodgson-Viden), Saskatoon, Sask.; Centre hospitalier universitaire de Québec (Laflamme), Québec, Que.; Child & Family Research Institute (Siden); Canuck Place Children's Hospice (Siden), Vancouver, BC.
authors.forename: Harold
authors.initials: H
authors.lastname: Siden