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End-of-life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions
Caterina Agosto1, Francesca Benedetti2, Valentina De Tommasi1
1Pediatric Pain and Palliative Care Service, Department of Women's and Children's Health, University Hospital, Padova, Italy.
Insights
End-of-life care for children with severe congenital heart disease (CHD) often continues intensive treatment, even when survival is unlikely. Parents and healthcare professionals may be reluctant to shift focus to comfort and quality of life.
Area of Science:
- Pediatric Cardiology
- Palliative Care
- Congenital Heart Disease
Background:
- Complex congenital heart diseases (CHD) are associated with significant post-surgical morbidity and mortality.
- Effective end-of-life (EoL) care is crucial for children with severe CHD.
Purpose of the Study:
- To analyze end-of-life (EoL) care in children with severe CHD who died in a tertiary cardiac care center.
- To investigate the perspectives of parents and healthcare professionals (HCPs) on EoL care.
Main Methods:
- Retrospective review of medical records for children (<18 years) with severe CHD who died.
- Cross-sectional questionnaire-based study involving parents and HCPs of these children.
Main Results:
- 30 children died, with a median age of 45 days; 97% died in intensive care, intubated and sedated.
- 77% of children died without parents present at the bedside.
- A majority of parents (61%) and HCPs (70%) aimed to lessen suffering, yet many (44% parents, 50% HCPs) recognized futility of care days before death.
Conclusions:
- Data suggest an unconscious reluctance to transition EoL care goals from intensive treatment to comfort and quality of life.
- There is a need to improve communication and goal setting in pediatric end-of-life care for complex CHD.
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.
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