Department of Neonatology, and Charité - Universitätsmedizin Berlin, Berlin, Germany.
Department of Obstetrics, Charité - Universitätsmedizin Berlin, Berlin, Germany.
J Palliat Med. 2023 Mar;26(3):393-401. doi: 10.1089/jpm.2022.0172. Epub 2022 Oct 11.
An increasing number of life-limiting conditions (LLCs) is diagnosed prenatally, presenting providers with the ability to present perinatal palliative care (PnPC) services as an option. To (1) determine the profile characteristics of patients referred for prenatal palliative care counseling to Charité Universitätsmedizin Berlin, Germany; (2) evaluate pregnancy outcome; and (3) analyze the additional human resources per family required to provide specialized PnPC. Retrospective chart review of pregnant women and infants with potentially LLCs referred for prenatal palliative care counseling between 2016 and 2020. A total of 115 women were referred for prenatal palliative care counseling. Most cases (57.6%) comprised trisomy 13 or 18 ( = 36) and complex congenital conditions ( = 32). Other life-limiting diagnoses included renal agenesis/severe dysplasia ( = 19), congenital heart diseases ( = 18), neurological anomalies ( = 8), and others ( = 5). In 72.0% of cases ( = 85) parents decided to continue pregnancy and plan for palliative birth. Fifty deliveries resulted in a liveborn infant: 33 of these died in the delivery room, 9 neonates died after admission to rooming-in on one of our neonatal wards, and 8 were discharged home or to a hospice. Total human resources (median, range) provided were 563 (0-2940) minutes for psychosocial and 300 (0-720) minutes for medical specialized PnPC per referral. Our data confirm previously observed characteristics of diagnoses, referrals, and outcomes. The provision of specialized and interprofessional PnPC services accounted for ∼14 hours per case of additional human resources.
越来越多的生命有限条件(LLC)在产前被诊断出来,这为提供者提供了提供围产期姑息治疗(PnPC)服务的选择。(1)确定在德国柏林夏里特医科大学接受产前姑息治疗咨询的患者的特征概况;(2)评估妊娠结局;(3)分析为提供专业 PnPC 而每个家庭所需的额外人力资源。回顾性图表审查了 2016 年至 2020 年期间因潜在 LLC 而接受产前姑息治疗咨询的孕妇和婴儿。共有 115 名妇女接受了产前姑息治疗咨询。大多数病例(57.6%)包括 13 号或 18 号三体( = 36)和复杂的先天性疾病( = 32)。其他生命有限的诊断包括肾发育不全/严重发育不良( = 19)、先天性心脏病( = 18)、神经畸形( = 8)和其他( = 5)。在 72.0%的病例( = 85)中,父母决定继续妊娠并计划姑息分娩。50 例分娩导致活产婴儿:33 例在分娩室死亡,9 例新生儿在入住我们的新生儿病房之一后死亡,8 例出院回家或入住临终关怀医院。每例患者提供的总人力资源(中位数,范围)分别为 563(0-2940)分钟的社会心理资源和 300(0-720)分钟的医学专业 PnPC 资源。我们的数据证实了以前观察到的诊断、转介和结果特征。专门的跨专业 PnPC 服务的提供需要大约 14 小时的额外人力资源。