When is enough, enough? Exploring ethical and team considerations in paediatric cardiac care dilemmas

Therapies for paediatric congenital and acquired heart disease continue to evolve and the appropriateness of pursuing life sustaining interventions at margins of standard therapy is ethically challenging.

With ongoing emphasis on shared decision making, recent literature explored physician and parental perspectives on communication with families and offering interventions for complex congenital heart disease and advanced heart failure. The inclusion of parental values and views in this process is now widely accepted. Identified outstanding challenges include difficulty with prognostication from the outset, adjusting long-term goals of care to changes in clinical parameters, need for consistency in communication including regular review meetings with family or surrogate decision-makers. Bioethics consultation and multidisciplinary team reviews may be helpful supports. Palliative care involvement in this population improves quality of life and alleviates parental distress but this collaboration is not optimized.

Decision to offer, forgo, or discontinue life-sustaining therapies for children with heart disease has nuanced and context-specific considerations, and must integrate burdens of interventions with patient and family values. Thus, decision making remains complex and demands thoughtful review of not only risks and benefits, but views and values, clearly communicated to team and family.