title: End-of-Life Decisions in Pediatric Cancer Patients.
abstract: BACKGROUND
  End-of-life decisions (ELDs) have been investigated in several care settings, but rarely in pediatric oncology.
  
  
  OBJECTIVE
  The aims of this study were to characterize the practice of end-of-life decision making in a Dutch academic medical center and to explore pediatric oncologists' perspectives on decision making.
  
  
  METHODS
  Between 2001 and 2010, in a specified period of 2 years, 57 children died of cancer. The attending pediatric oncologists of 48 deceased children were eligible for this study. They were requested to complete a retrospective questionnaire on characteristics of ELDs that may have preceded a child's death. ELDs were defined as decisions concerning administering or forgoing treatment that may unintentionally or intentionally hasten death.
  
  
  RESULTS
  In 31 of 48 cases (65%) one or more ELDs were made. In 20 of 31 cases potentially life-prolonging treatments were discontinued or withheld, and in 22 of 31 cases drugs were administered to alleviate pain or other symptoms in potentially life-shortening dosages. Frequently mentioned considerations for making ELDs were no prospects of improvement (n=21;68%) and unbearable suffering without a curative perspective (n=13;42%). ELDs were discussed with parents in all cases, and with the child in 9 of 31 cases. After the child's death, the pediatric oncologist met the parents in all ELD cases and in 11 of 17 non-ELD cases. Pediatric oncologists were satisfied with care around the child's death in 90% of the ELD cases versus 59% of the non-ELD cases.
  
  
  CONCLUSIONS
  In two-thirds of cases, ELDs preceded the death of a child with cancer. This is the first study providing insights into the characteristics of ELDs from a pediatric oncologist's point of view.
authors.affiliation: 1 Department of Radiology, Medical Center Haaglanden , The Hague, The Netherlands .|2 Department of Pediatric Oncology/Hematology, Erasmus MC-Sophia Children's Hospital , Rotterdam, The Netherlands .|3 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands .
authors.forename: Rhiannon B
authors.initials: RB
authors.lastname: van Loenhout
authors.affiliation: 2 Department of Pediatric Oncology/Hematology, Erasmus MC-Sophia Children's Hospital , Rotterdam, The Netherlands .|4 Princess Maxima Center for Pediatric Oncology , Utrecht, The Netherlands .
authors.forename: Ivana M M
authors.initials: IM
authors.lastname: van der Geest
authors.affiliation: 3 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands .
authors.forename: Astrid M
authors.initials: AM
authors.lastname: Vrakking
authors.affiliation: 3 Department of Public Health, Erasmus MC, Rotterdam, The Netherlands .
authors.forename: Agnes
authors.initials: A
authors.lastname: van der Heide
authors.affiliation: 4 Princess Maxima Center for Pediatric Oncology , Utrecht, The Netherlands .
authors.forename: Rob
authors.initials: R
authors.lastname: Pieters
authors.affiliation: 4 Princess Maxima Center for Pediatric Oncology , Utrecht, The Netherlands .
authors.forename: Marry M
authors.initials: MM
authors.lastname: van den Heuvel-Eibrink
mesh_terms: D000293:Adolescent; D001291:Attitude of Health Personnel; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008495:Medical Oncology; D009369:Neoplasms / Q000401:mortality* / Q000628:therapy*; D009426:Netherlands / Q000453:epidemiology; D010166:Palliative Care; D010372:Pediatrics; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D019452:Terminally Ill; D055815:Young Adult