Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia

Abstract

In the practice of pediatric cardiology, situations are possible when a child with congenital heart disease cannot be subjected to radical or even hemodynamic surgery. As a rule, such severe heart defects are combined with other genetic anomalies, which ultimately lead to the palliative status of the newborn. This situa­tion is a serious ethical and psychological challenge for medical workers in both the antenatal and postnatal periods. In the proposed article, we present a case of a child with congenital heart disease, which was part of frontonasal dysplasia due to ZSWIM6 gene mutation. This observation illustrates a number of ethical and psychological problems, difficult decisions and communication questions that are typical for such a difficult life situation as the birth of a terminally ill child. The example is illustrative in general for the ethical problems of a disabling congenital disease, which can be encountered in the practice of a pediatric cardiologist. From a broader perspective, the example illustrates uncertainty as an inevitable component of medical decision making and informing the patient (his legal representatives).

Keywords

• congenital malformations
• congenital heart defects
• frontonasal dysplasia
• medical ethics
• collaborative decision making in medicine
• patient-centered care