title: Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*.
abstract: OBJECTIVE
  To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease.
  
  
  METHODS
  Cross-sectional multicenter survey study of bereaved parents.
  
  
  METHODS
  Two tertiary care pediatric hospitals.
  
  
  METHODS
  Parents of children younger than 21 years with primary cardiac diagnoses who died in the hospital 9 months to 4 years before the survey date. Parents were excluded if they were non-English speakers or had previously denied permission to contact.
  
  
  METHODS
  The Survey for Caring for Children with Advanced Heart Disease was developed, piloted, and then sent to parents of all children who died at two sites.
  
  
  RESULTS
  Fifty bereaved parents responded (39% response rate) a mean of 2.7 years after their child's death. Median age at death was 6 months (3.6 d to 20.4 yr). At end-of-life, 86% of children were intubated and 46% were receiving mechanical circulatory support. Seventy-eight percent died during withdrawal of life-sustaining interventions and 16% during resuscitative efforts. Parents realized that their child had no realistic chance of survival a median of 2 days prior to death (0-30 d). According to parents, 47% of children suffered "a great deal," "a lot," or "somewhat" during the end-of-life period. The symptoms parents perceived to be causing the most suffering were breathing and feeding difficulties in children under 2 years and fatigue and sleeping difficulties in older children. Seventy-one percent of parents described the quality of life of their child during the last month of life as "poor" or "fair." Most parents (84%) described the quality of care delivered as "very good" or "excellent."
  
  
  CONCLUSIONS
  According to their parents, many children with advanced heart disease experience suffering in the end-of-life care period. For most, realization that their child has no realistic chance of survival does not occur until late, some not until death is imminent. Once this realization occurs, however, parents perceive peacefulness, a "good death," and excellent quality of care. Strategies for improved communication around symptom management, quality of life, prognosis, and advance care planning are needed for families of children with advanced heart disease.
authors.affiliation: 1Department of Cardiology, Boston Children's Hospital, Boston, MA. 2Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children's Hospital, Ann Arbor, MI. 3Department of Adolescent Medicine and Program for Patient Safety and Quality, Boston Children's Hospital, Boston, MA. 4Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA.
authors.forename: Elizabeth D
authors.initials: ED
authors.lastname: Blume
authors.forename: Emily Morell
authors.initials: EM
authors.lastname: Balkin
authors.forename: Ranjit
authors.initials: R
authors.lastname: Aiyagari
authors.forename: Sonja
authors.initials: S
authors.lastname: Ziniel
authors.forename: Dorothy M
authors.initials: DM
authors.lastname: Beke
authors.forename: Ravi
authors.initials: R
authors.lastname: Thiagarajan
authors.forename: Laura
authors.initials: L
authors.lastname: Taylor
authors.forename: Thomas
authors.initials: T
authors.lastname: Kulik
authors.forename: Kenneth
authors.initials: K
authors.lastname: Pituch
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
mesh_terms: D000293:Adolescent; D000328:Adult; D001293:Attitude to Death; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D003643:Death; D004417:Dyspnea / Q000523:psychology; D005221:Fatigue / Q000523:psychology; D001068:Feeding and Eating Disorders / Q000523:psychology; D005260:Female; D006331:Heart Diseases / Q000523:psychology* / Q000628:therapy; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000523:psychology; D010166:Palliative Care / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D011787:Quality of Health Care; D011788:Quality of Life; D013727:Terminal Care / Q000523:psychology*; D028761:Withholding Treatment; D055815:Young Adult