title: Adolescent end of life preferences and congruence with their parents' preferences: results of a survey of adolescents with cancer.
abstract: BACKGROUND
  Little is known about how well family members accurately represent adolescents when making EOL decisions on their behalf. This study reports on surveys given to adolescents with cancer and their parents as part of a larger study facilitating advanced care discussions, as well as the results of a survey for health care providers.
  
  
  METHODS
  Trained facilitators administered surveys orally to adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE-TC) study. In addition, a post-hoc survey was sent to oncology providers.
  
  
  RESULTS
  Seventeen adolescent/family dyads completed this survey. Seventy five percent of adolescents believed it was appropriate to discuss EOL decisions early and only 12% were not comfortable discussing death. Most preferred to be at home if dying. There were substantial areas of congruence between adolescents and their surrogates, but lower agreement on the importance of dying a natural death, dying at home and "wanting to know if I were dying." Among providers, 83% felt their patients' participation in the study was helpful to the patients and 78% felt it was helpful to them as providers.
  
  
  CONCLUSIONS
  Adolescents with cancer were comfortable discussing EOL, and the majority preferred to talk about EOL issues before they are facing EOL. There were substantive areas of agreement between adolescents and their surrogates, but important facets of adolescents' EOL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children's wishes.
authors.affiliation: Children's National Medical Center/Division of Oncology/Children's Research Institute/Center for Cancer and Immunology Research and George Washington University School of Medicine and Health Sciences, Washington, District of Columbia.
authors.forename: Shana
authors.initials: S
authors.lastname: Jacobs
authors.forename: Jennie
authors.initials: J
authors.lastname: Perez
authors.forename: Yao Iris
authors.initials: YI
authors.lastname: Cheng
authors.forename: Anne
authors.initials: A
authors.lastname: Sill
authors.forename: Jichuan
authors.initials: J
authors.lastname: Wang
authors.forename: Maureen E
authors.initials: ME
authors.lastname: Lyon
mesh_terms: D000293:Adolescent; D000328:Adult; D001293:Attitude to Death; D005260:Female; D006801:Humans; D009369:Neoplasms / Q000523:psychology*; D010290:Parents; D011795:Surveys and Questionnaires
keywords: adolescents; advanced care planning; cancer; decision making; end of life