Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia
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 th...
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| Format: | Article |
| Language: | Russian |
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«FIRMA «SILICEA» LLC
2023-06-01
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| Series: | Российский кардиологический журнал |
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| Online Access: | https://russjcardiol.elpub.ru/jour/article/view/5449 |
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| author | O. I. Taratukhin E. V. Polevichenko K. A. Zamyatin O. V. Kozhevnikova E. Yu. Sapego |
| author_facet | O. I. Taratukhin E. V. Polevichenko K. A. Zamyatin O. V. Kozhevnikova E. Yu. Sapego |
| author_sort | O. I. Taratukhin |
| collection | DOAJ |
| description | 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). |
| format | Article |
| id | doaj-art-e17856a8a06f40c29f8403f23704df21 |
| institution | Kabale University |
| issn | 1560-4071 2618-7620 |
| language | Russian |
| publishDate | 2023-06-01 |
| publisher | «FIRMA «SILICEA» LLC |
| record_format | Article |
| series | Российский кардиологический журнал |
| spelling | doaj-art-e17856a8a06f40c29f8403f23704df212025-08-20T03:43:40Zrus«FIRMA «SILICEA» LLCРоссийский кардиологический журнал1560-40712618-76202023-06-0128510.15829/1560-4071-2023-54493821Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasiaO. I. Taratukhin0E. V. Polevichenko1K. A. Zamyatin2O. V. Kozhevnikova3E. Yu. Sapego4Pirogov Russian National Research Medical UniversityPirogov Russian National Research Medical UniversityPirogov Russian National Research Medical UniversityRegional Center for Palliative Care for Children, Regional Children’s Clinical HospitalRegional Center for Palliative Care for Children, Regional Children’s Clinical HospitalIn 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).https://russjcardiol.elpub.ru/jour/article/view/5449congenital malformationscongenital heart defectsfrontonasal dysplasiamedical ethicscollaborative decision making in medicinepatient-centered care |
| spellingShingle | O. I. Taratukhin E. V. Polevichenko K. A. Zamyatin O. V. Kozhevnikova E. Yu. Sapego Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia Российский кардиологический журнал congenital malformations congenital heart defects frontonasal dysplasia medical ethics collaborative decision making in medicine patient-centered care |
| title | Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia |
| title_full | Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia |
| title_fullStr | Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia |
| title_full_unstemmed | Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia |
| title_short | Ethical side of decision-making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia |
| title_sort | ethical side of decision making on palliative care to a child with congenital heart disease associated with frontonasal dysplasia |
| topic | congenital malformations congenital heart defects frontonasal dysplasia medical ethics collaborative decision making in medicine patient-centered care |
| url | https://russjcardiol.elpub.ru/jour/article/view/5449 |
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