Department of Pediatrics, School of Medicine, Stanford University, Stanford, California, USA.
Curr Opin Pediatr. 2019 Oct;31(5):611-616. doi: 10.1097/MOP.0000000000000799.
Advanced heart failure in children is characterized by dynamic clinical trajectories, uncertainty of prognosis, and intermittent need for difficult decision-making, often related to novel therapeutic interventions with uncertain impact on quality of life. This review will examine the current role of palliative care to support this unique population.
Pediatric heart failure patients commonly die in ICUs with high burden of invasive therapies together with end of life care needs. In addition, several studies advocate for integration of palliative care early in disease trajectory, not only focused on end of life care. Many advocate for the core tenets of palliative care (symptom management, communication of prognosis, and advanced care planning) to be provided by the primary cardiology team, with consultation by pediatric palliative care specialists. There is also a consensus that palliative care training should be incorporated into pediatric advanced heart disease training programs.
Palliative care is an important component of pediatric heart failure care. Research and quality improvement efforts are needed to determine the most effective palliative care interventions for children with advanced heart disease. Provision of palliative care is an essential component of training for pediatric heart failure and transplant specialists.
儿童晚期心力衰竭的特点是临床轨迹动态变化、预后不确定,以及间歇性需要做出艰难决策,这些决策通常与新型治疗干预措施有关,而这些措施对生活质量的影响尚不确定。本综述将探讨姑息治疗在支持这一独特人群中的当前作用。
患有心力衰竭的儿科患者通常在 ICU 中死亡,他们需要进行侵入性治疗,同时还需要临终关怀。此外,多项研究提倡在疾病轨迹的早期就将姑息治疗整合进来,而不仅仅是关注临终关怀。许多人主张姑息治疗的核心原则(症状管理、预后沟通和预先医疗指示)应由主要的心脏病学团队提供,并由儿科姑息治疗专家提供咨询。还有一个共识是,姑息治疗培训应该纳入儿科晚期心脏病培训计划。
姑息治疗是儿童心力衰竭治疗的一个重要组成部分。需要开展研究和质量改进工作,以确定针对晚期心脏病儿童的最有效姑息治疗干预措施。姑息治疗的提供是儿童心力衰竭和心脏移植专家培训的重要组成部分。