Hope Kyle D, Bhat Priya N, Dreyer William J, Elias Barbara A, Jump Jaime L, Santucci Gina, Afonso Natasha S, Ninemire Margaret R, Achuff Barbara-Jo, Kritz Erin M, Gowda Sharada H, Puri Kriti
Lillie Frank Abercrombie Section of Cardiology, Department of Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, TX 77030, USA.
Section of Pediatric Critical Care Medicine, Department of Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, TX 77030, USA.
Children (Basel). 2021 Jun 2;8(6):468. doi: 10.3390/children8060468.
Heart failure is a life-changing diagnosis for a child and their family. Pediatric patients with heart failure experience significant morbidity and frequent hospitalizations, and many require advanced therapies such as mechanical circulatory support and/or heart transplantation. Pediatric palliative care is an integral resource for the care of patients with heart failure along its continuum. This includes support during the grief of a new diagnosis in a child critically ill with decompensated heart failure, discussion of goals of care and the complexities of mechanical circulatory support, the pensive wait for heart transplantation, and symptom management and psychosocial support throughout the journey. In this article, we discuss the scope of pediatric palliative care in the realm of pediatric heart failure, ventricular assist device (VAD) support, and heart transplantation. We review the limited, albeit growing, literature in this field, with an added focus on difficult conversation and decision support surrounding re-transplantation, HF in young adults with congenital heart disease, the possibility of destination therapy VAD, and the grimmest decision of VAD de-activation.
心力衰竭对儿童及其家庭来说是一个改变生活的诊断。患有心力衰竭的儿科患者会出现严重的发病率和频繁住院的情况，许多患者需要先进的治疗方法，如机械循环支持和/或心脏移植。儿科姑息治疗是心力衰竭患者整个病程护理中不可或缺的资源。这包括在患有失代偿性心力衰竭的危重症儿童被新诊断时的悲伤情绪期间提供支持，讨论护理目标以及机械循环支持的复杂性，对心脏移植的漫长等待，以及在整个过程中的症状管理和心理社会支持。在本文中，我们讨论儿科姑息治疗在儿科心力衰竭、心室辅助装置（VAD）支持和心脏移植领域的范围。我们回顾了该领域虽有限但不断增长的文献，特别关注围绕再次移植、先天性心脏病青年成人的心力衰竭、终末期治疗VAD的可能性以及VAD停用这一最严峻决定的艰难对话和决策支持。
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