End‐of‐life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions. (29th December 2020)

• Record Type: Journal Article
• Authors: Agosto, Caterina; Benedetti, Francesca; De Tommasi, Valentina; Milanesi, Ornella; Stellin, Giovanni; Padalino, Massimo A; Benini, Franca
• Is Part Of: Journal of paediatrics and child health. Volume 57:Number 5(2021)
• Page Start: 696
• Page End: 701
• Publication Date: 2020-12-29
• Subjects: bereavement -- congenital heart disease -- end‐of‐life care -- paediatric intensive care unit -- paediatric palliative care -- quality of dying and death; Children -- Health and hygiene -- Periodicals; Pediatrics -- Periodicals; 618.92
• DOI: 10.1111/jpc.15316
• Languages: English
• ISSNs: 1034-4810

Abstract

Abstract : Aim: In complex congenital heart diseases (CHD), patients may remain affected by significant morbidity and mortality after surgery. We analysed the end‐of‐life (EoL) care in children with severe CHD who died in our institution and investigated perspectives of parents and health‐care professionals (HCPs). Methods: Medical records of all children (age < 18 years old) affected by a severe CHD who died in a tertiary cardiac care centre were reviewed. Subsequently, a cross‐sectional questionnaire‐based study of parents and HCPs of children involved in the study was designed. Results: In total, 30 children died (median age: 45 days; range: 15 days to 3.4 years). Of them, 97% (31/32) died in an intensive care unit setting and were intubated and sedated at EoL. A total of 77% (23/30) died without parents being present at bedside. Eighteen families and 10 HCPs were interviewed. For 61% of the parents (11/18) and 70% of the clinicians (7/10), the goal of therapy at the EoL was 'to lessen your child's suffering as much as possible'. Overall, 44% of parents (8/18) and 50% of HCPs recognised that their child had no chance of survival 'a few days before the child died'. Conclusions: We believe that these data suggest an unconscious reluctance to change goals of care in EoL, shifting from intensive care to comfort and quality of life.