Hauch Holger, El Mohaui Naual, Wolff Johannes E A, Vaillant Vera, Brill Sabine, Schneck Emmanuel, Ströter Natascha, Sibelius Ulf, Kriwy Peter, Berthold Daniel
Palliative Care Team for Children, University Children's Hospital Giessen, Giessen, Germany.
Pediatric Oncology, Cleveland Clinic, Cleveland, OH, United States.
Front Pediatr. 2021 Dec 22;9:734181. doi: 10.3389/fped.2021.734181. eCollection 2021.
Specialized palliative home care (SPHC) enables children and adolescents with life-limiting illnesses and complex needs to receive care at home. In addition to controlling symptoms and stabilizing the psychosocial situation, crisis anticipation is a component of SPHC. Since the establishment of the reporting SPHC team, parents have called for additional help from emergency medical services (EMS) in emergency situations with unexpected frequency. Children with life limiting diseases could undergo invasive procedures and unhelpful treatments with uncertain consequences. The questions arose as to which factors led to the involvement of the EMS in a palliative situation, what therapy was performed and what outcome could be reached. Records of the pediatric SPHC patients and EMS call-outs in these children of the reporting SPHC-team in the central region of Hesse, Germany (population: 1.1 million) were retrospectively analyzed from 01.11.2014 to 01.05.2021. The causes of the call-outs, the existence of an emergency agreement, the National Advisory Committee for Aeronautics (NACA) score, EMS therapy and outcome were examined. Patient data included age, palliative-justifying diagnosis, duration and intensity of care, place of death and median overall survival (MOS) and palliative SHPC treatment. In total, 172 patients were analyzed during the study period. There were 27 EMS calls for a total of 20 patients/families (= EMS group). Palliative illness or a complication was the most frequent cause of call-outs. The patients in the EMS group were significantly less likely to have a DNR order, required more home visits and telephone calls and were under SPHC care for longer. There was a significantly higher proportion of crisis interventions at home visits. The children in the EMS group died less often from the underlying disease. Of the remaining 152 patients (= non-EMS group), a significantly higher proportion had a European home country. Despite the introduction of the SPHC, parents still call the EMS. Good cooperation and joint training should be sought to prepare all those involved for future call-outs.
专业姑息家庭护理(SPHC)使患有危及生命疾病且有复杂需求的儿童和青少年能够在家中接受护理。除了控制症状和稳定心理社会状况外,危机预判也是SPHC的一个组成部分。自报告的SPHC团队成立以来,家长们出乎意料地频繁呼吁紧急医疗服务(EMS)在紧急情况下提供额外帮助。患有危及生命疾病的儿童可能会接受侵入性操作和无效治疗,后果难以确定。问题在于哪些因素导致了EMS参与姑息治疗情况、进行了何种治疗以及能取得何种结果。对德国黑森州中部地区(人口:110万)报告的SPHC团队中这些儿童的儿科SPHC患者记录和EMS出诊情况进行了回顾性分析,时间跨度为2014年11月1日至2021年5月1日。检查了出诊原因、是否存在紧急协议、国家航空咨询委员会(NACA)评分、EMS治疗及结果。患者数据包括年龄、姑息治疗诊断依据、护理时长和强度、死亡地点以及中位总生存期(MOS)和姑息性SHPC治疗。在研究期间共分析了172例患者。共有20名患者/家庭发生了27次EMS出诊(=EMS组)。姑息性疾病或并发症是最常见的出诊原因。EMS组的患者签署“不要复苏”医嘱的可能性显著更低,需要更多的家访和电话随访,并且接受SPHC护理的时间更长。家访时进行危机干预的比例显著更高。EMS组的儿童死于基础疾病的情况较少。在其余152例患者(=非EMS组)中,来自欧洲国家的比例显著更高。尽管引入了SPHC,但家长们仍会呼叫EMS。应寻求良好的合作和联合培训,让所有相关人员为未来的出诊做好准备。