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Informed consent and hypoplastic left heart syndrome
1Department of Pediatrics, University Of Alberta, and Neonatal ICU Stollery Children's Hospital, Edmonton, Canada. pdambros@cha.ab.ca
Acta Paediatrica (Oslo, Norway : 1992)
|October 6, 2005
Summary
Life-saving surgery for hypoplastic left heart syndrome (HLHS) is increasingly common, but outcomes raise ethical concerns. Findings suggest current practices may not align with shared decision-making, questioning the universal shift from comfort care.
Area of Science:
- Medical Ethics
- Pediatric Cardiology
- Neonatal Care
Background:
- Hypoplastic left heart syndrome (HLHS) management has evolved.
- A shift from comfort care to life-saving surgery (LST) occurred at the University of Alberta.
Purpose of the Study:
- To ethically analyze the change in HLHS clinical management.
- To evaluate shared decision-making and informed consent in HLHS treatment shifts.
Main Methods:
- Retrospective review of HLHS treatment changes (1987-2001).
- Analysis of survival rates, preoperative deaths, and neurodevelopmental outcomes (Bayley MDI).
Main Results:
- Between 1996-2001, 49/62 infants received LST, with 81% NICU survival and 58% survival at 35 months.
- Eleven infants died preoperatively from non-cardiac conditions; two received comfort care.
- 18-month Bayley MDI scores averaged 84+/-19, with five infants scoring below 70.
Conclusions:
- Findings are inconsistent with open, shared decision-making and informed consent.
- Comfort care should remain an ethically valid option for HLHS.
- A decrease in serious long-term complications of LST is needed to justify its near-universal use.