title: Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care.
abstract: OBJECTIVE
  Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under specific circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents.
  
  
  METHODS
  This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology.
  
  
  RESULTS
  All parents were satisfied with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team.
  
  
  CONCLUSIONS
  FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option.
authors.affiliation: Paediatric Advanced Care Team, Hospital for Sick Children, Toronto, ON, Canada. adam.rapoport@sickkids.ca
authors.forename: Adam
authors.initials: A
authors.lastname: Rapoport
authors.forename: Jenny
authors.initials: J
authors.lastname: Shaheed
authors.forename: Christine
authors.initials: C
authors.lastname: Newman
authors.forename: Maria
authors.initials: M
authors.lastname: Rugg
authors.forename: Rose
authors.initials: R
authors.lastname: Steele
mesh_terms: D000293:Adolescent; D000328:Adult; D001293:Attitude to Death; D003657:Decision Making; D004750:Enteral Nutrition / Q000379:methods*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009864:Ontario; D010166:Palliative Care / Q000379:methods; D010290:Parents / Q000523:psychology*; D010465:Perception; D011788:Quality of Life; D013727:Terminal Care / Q000941:ethics / Q000379:methods / Q000523:psychology*
keywords: artificial nutrition and hydration; death; end of life; palliative care