Bergsträsser Eva, Lukose Saumya, Zimmermann Karin, Oxenius Angela
Pediatric Palliative Care, Department of Medicine I, University Children's Hospital Zurich, Zurich, Switzerland.
Department Public Health, Nursing Science, University of Basel, Basel, Switzerland.
Front Cardiovasc Med. 2022 Apr 8;9:863031. doi: 10.3389/fcvm.2022.863031. eCollection 2022.
Palliative care for children continues to evolve. More recently, this has also been true in the field of pediatric cardiology, particularly for children with advanced heart disease. In these children, similarly to children with cancer, treatment successes are offset by the risks of long-term morbidities, including premature death. This mini review aims to provide an overview of current knowledge on children suffering from advanced heart disease, their medical care during various phases of illness (including the palliative and end-of-life phase), symptom burden, experiences of parents, prognostic understanding of parents and physicians, and current status of the involvement of pediatric palliative care. In conclusion, the suffering of these children at the end of their young lives is pronounced and many parents feel prepared neither for medical problems nor for the child's death. An effective and mutually trusting partnership between pediatric cardiology and pediatric palliative care would appear to be a prerequisite for the timely involvement of palliative care in further supporting these children and their families.
儿童姑息治疗仍在不断发展。最近,在儿科心脏病学领域也是如此,尤其是对于患有晚期心脏病的儿童。在这些儿童中,与癌症患儿类似,治疗成功被长期发病风险所抵消,包括过早死亡。本综述旨在概述目前关于患有晚期心脏病儿童的知识,他们在疾病各个阶段(包括姑息治疗和生命末期阶段)的医疗护理、症状负担、家长的经历、家长和医生对预后的理解,以及儿科姑息治疗的参与现状。总之,这些儿童在年幼生命末期的痛苦十分明显,许多家长对医疗问题和孩子的死亡都没有做好准备。儿科心脏病学和儿科姑息治疗之间建立有效且相互信任的伙伴关系,似乎是姑息治疗及时介入以进一步支持这些儿童及其家庭的先决条件。