title: Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations.
abstract: OBJECTIVE
  Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective.
  
  
  METHODS
  This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication.
  
  
  RESULTS
  Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith.
  
  
  CONCLUSIONS
  Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research.
authors.affiliation: Medical Surgical Intensive Care Unit, Children's Hospital Boston, Boston, MA, USA. elaine.meyer@childrens.harvard.edu
authors.forename: Elaine C
authors.initials: EC
authors.lastname: Meyer
authors.forename: Marilyn D
authors.initials: MD
authors.lastname: Ritholz
authors.forename: Jeffrey P
authors.initials: JP
authors.lastname: Burns
authors.forename: Robert D
authors.initials: RD
authors.lastname: Truog
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003657:Decision Making; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D015278:Intensive Care Units, Pediatric; D010166:Palliative Care / Q000523:psychology*; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*