Friedrichsdorf Stefan J, Menke Andrea, Brun Sandra, Wamsler Christine, Zernikow Boris
Vest Children's Hospital, Institute of Children's Pain Management and Pediatric Palliative Care, University of Witten/Herdecke, Datteln, Germany.
J Pain Symptom Manage. 2005 Feb;29(2):156-64. doi: 10.1016/j.jpainsymman.2004.05.004.
Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73) German pediatric oncology units (response rate 97%) provided information on the timing of breaking bad news, place of death, orchestrating palliative care at home and on the ward, integration of services and staff, funding of palliative care, bereavement services for siblings and parents, educational needs, level of self-satisfaction, and designated integrated palliative care services for children with cancer. More than 60% of children with malignancies died as inpatients in 2000, fewer than 40% at home. Twenty-nine pediatric cancer departments were able to provide comprehensive medical palliative home care, and nine units incorporate a designated palliative care team or person. Only half of the departments provide bereavement services for siblings. Many health professionals working on pediatric cancer units in Germany provide palliative home care in their free time without any payment. They predominantly use their private vehicles and often are unclear about the legal background and insurance arrangements covering their provision of care. The data suggest an important need for education about palliative and end-of-life care. The majority of children dying from cancer in Germany do not have access to comprehensive palliative care services at home. Our study highlights the necessity of incorporating the palliative paradigm into the care of children with cancer. Barriers to its implementation must be identified and overcome.
癌症是患有危及生命疾病的儿童群体中的主要死因。此前尚未在全国范围内对家庭和儿童癌症病房的姑息治疗情况进行调查。对德国73家儿科肿瘤病房中的71家（回复率97%）进行的一项调查，提供了关于告知坏消息的时机、死亡地点、在家中和病房协调姑息治疗、服务与人员整合、姑息治疗资金、为兄弟姐妹和父母提供的哀伤辅导服务、教育需求、自我满意度水平以及为癌症患儿指定的综合姑息治疗服务等方面的信息。2000年，超过60%的恶性肿瘤患儿在住院期间死亡，在家中死亡的不到40%。29个儿科癌症科室能够提供全面的医疗姑息家庭护理，9个科室设有专门的姑息治疗团队或人员。只有一半的科室为兄弟姐妹提供哀伤辅导服务。德国许多在儿科癌症病房工作的医护人员在业余时间无偿提供姑息家庭护理。他们主要使用自己的私家车，而且往往不清楚提供护理的法律背景和保险安排。数据表明，对姑息治疗和临终关怀教育有重要需求。在德国，大多数死于癌症的儿童无法在家中获得全面的姑息治疗服务。我们的研究强调了将姑息治疗模式纳入癌症患儿护理的必要性。必须识别并克服其实施过程中的障碍。
