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

Abstract

Purpose of reviewTherapies 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. Recent findingsWith 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.

Communication challenges: perioperative risks and care directives

“…The decision to pursue potentially life-sustaining interventions can be fraught when it is not clear whether invasive therapies will improve quality or length of life. There is a lack of research available on the specific language to use in these challenging conversations [1]. In a multicenter, qualitative study exploring providers’ perspectives regarding shared decision-making with parents of newborns with complex CHD, key barriers to communication were identified; these included variability among providers themselves, factors that influenced parental comprehension or understanding, discrepant expectations, circumstantial barriers, and trust/relationship with providers [2].…”