Ethical considerations in pediatric intensive care palliative care: a case study of a patient with Edwards syndrome

Abstract

Introduction: This study addresses Edwards syndrome, a chromosomal condition affecting approximately 1 in 6,000 live births. The syndrome exhibits diverse phenotypic features, diagnosable prenatally or postnatally, with reserved life expectancy. Families face complex psychosocial challenges due to the syndrome’s implications, impacting emotional adjustment, treatment decisions, and coping with socioeconomic barriers. Case presentation: A patient with Edwards syndrome is described, emphasizing the severity of malformations and a multidisciplinary approach. The patient, with severe cardiac malformations, was diagnosed shortly after birth. Due to dependency on hospital equipment, the multidisciplinary team opted, in agreement with the family, for palliative care until death. The patient passed away 20 days after the initiation of palliative care, seemingly free of pain or visible discomfort. Discussion: The ethical approach in palliative care, especially in Edwards syndrome, involves orthothanasia, aiming to respect the overall well-being and dignity of the terminally ill patient. Effective and empathetic communication, preparation for hospital discharge to allow for death at home, and post-decision follow-up are crucial aspects. The correct practice of orthothanasia involves technical competence and ethical sensitivity, emphasizing a multidisciplinary and transdisciplinary approach. Conclusions: This case study highlights the importance of palliative care in Edwards syndrome, emphasizing the need for a holistic and compassionate approach considering the physical, emotional, and social needs of the patient and their family. Collaboration strategies, open communication, health professional training, and the implementation of family-centered care are essential to providing effective and compassionate palliative care in these complex cases.