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Does Consenting to the First Stage Palliation for Hypoplastic Left Heart Syndrome Obligate Parents to Consent to the Second Stage?

January 21, 2025

In this month’s Pediatrics Ethics Rounds (10.1542/peds.2024-065655), Dr. Agustin Silberberg and colleagues present the case of parents who unexpectedly decide not to proceed with the second stage palliation of their daughter Judith’s hypoplastic left heart syndrome. Judith unfortunately experienced multiple complications following the first stage that necessitated additional medical interventions. For example, she developed acute renal dysfunction requiring peritoneal dialysis. She has recovered from these complications without permanent major disabilities and her providers recommend proceeding with the second stage. While Judith has a higher-than-usual risk of complications, the mortality rate of the second stage is substantially lower than the first (1–2% compared to 15–20%). Adequately informed, her parents decline and ask to take her home. If you were Judith’s intensivist or surgeon, what would you do?

It is not uncommon for Ethics Rounds to receive proposals for manuscripts about parents’ refusal of recommended treatment. Some authors apply established frameworks, such as Doug Diekema’s Harm Principle or Mark Mercurio and Christy Cummings’ Impermissible-Permissible-Obligatory (I-P-O) Framework to different cases. Over time, such analyses make smaller contributions to the literature.

This month’s Ethics Rounds does more, including calling attention to the importance of reducing medical trauma and acute stress and their adverse effects on medical decision-making, as well as highlighting international variation.

Ethics Rounds continues to welcome such novel analyses. Other potential contributions include advancing significant criticisms or refinements of the frameworks themselves. Maggie Taylor, for example, has advanced interesting criticisms of the Harm Principle.

As always, I am happy to answer questions about potential submissions.

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