Ethical dilemmas in continuing pregnancy after a prenatal diagnosis of congenital heart defects: a systematic review and narrative synthesis

Abstract

BackgroundCongenital heart defects (CHD) are a significant cause of prenatal and postnatal morbidity and mortality, leading to complex ethical and moral decisions for parents when diagnosed in utero. The decision to continue or terminate a pregnancy after a CHD diagnosis involves multifaceted considerations, including cultural, religious, and personal values, alongside medical, ethical, and socioeconomic factors. This systematic review delves into the multifaceted moral considerations involved in the decision-making process regarding continuing a pregnancy following a CHD diagnosis.MethodsA systematic review of the literature was conducted using a narrative synthesis approach. Peer-reviewed qualitative, quantitative, and mixed-methods studies addressing ethical issues related to parental decision-making and clinical care following a prenatal CHD diagnosis were included. A comprehensive search was performed across multiple databases: MEDLINE, PsycINFO, Scopus, Web of Science (WOS), CINAHL, ProQuest, ERIC, and Embase. Findings were synthesized thematically to identify key ethical tensions, factors contributing to moral complexity, challenges faced by parents and healthcare providers, and supportive strategies.ResultsThe synthesis of 25 studies from North America, Europe, Australia, and the Middle East (Iran) revealed a universal parental experience of acute psychological crisis following a prenatal diagnosis of CHD. However, the ethical frameworks guiding parental decision-making were highly context-dependent. Three overarching themes emerged: (1) a central ethical tension between the sanctity of life and the quality of life, with perspectives strongly shaped by religious beliefs, legal statutes, and cultural norms; (2) The Lived Experience of the Decision-Making Crisis; and (3) Strategies for Navigating the Ethical Terrain.ConclusionA prenatal CHD diagnosis initiates a profound moral journey for parents that extends far beyond a medical decision. The resulting psychological crisis-driven by the tension between sanctity and quality of life-underscores the need for a shift in clinical practice. Evidence supports the adoption of a holistic, multidisciplinary framework grounded in cultural sensitivity and empathetic communication to empower parents in making value-congruent choices during one of life's most difficult experiences.