Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia
| Autor: | O. I. Taratukhin, E. V. Polevichenko, K. A. Zamyatin, O. V. Kozhevnikova, E. Yu. Sapego |
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| Jazyk: | ruština |
| Rok vydání: | 2023 |
| Předmět: | |
| Zdroj: | Российский кардиологический журнал, Vol 28, Iss 5 (2023) |
| Druh dokumentu: | article |
| ISSN: | 1560-4071 2618-7620 |
| DOI: | 10.15829/1560-4071-2023-5449 |
| Popis: | 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). |
| Databáze: | Directory of Open Access Journals |
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