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. 2021 May;57(5):696-701.
doi: 10.1111/jpc.15316. Epub 2020 Dec 29.

End-of-life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions

Caterina Agosto  1 , Francesca Benedetti  2 , Valentina De Tommasi  1 , Ornella Milanesi  3 , Giovanni Stellin  4 , Massimo A Padalino  4 , Franca Benini  1
Affiliations

End-of-life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions

Caterina Agosto et al. J Paediatr Child Health. 2021 May.

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.

Keywords: bereavement; congenital heart disease; end-of-life care; paediatric intensive care unit; paediatric palliative care; quality of dying and death.

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