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

• Published in: Rossiĭskiĭ kardiologicheskiĭ zhurnal Vol. 28; no. 5; p. 5449
• Main Authors: Taratukhin, O. I., Polevichenko, E. V., Zamyatin, K. A., Kozhevnikova, O. V., Sapego, E. Yu
• Format: Journal Article
• Language: English; Russian
• Published: FIRMA «SILICEA» LLC 01.06.2023
• Subjects: collaborative decision making in medicine; congenital heart defects; congenital malformations; frontonasal dysplasia; medical ethics; patient-centered care
• ISSN: 1560-4071; 2618-7620
• DOI: 10.15829/1560-4071-2023-5449

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).