Falkenburg Jeannette L, Tibboel Dick, Ganzevoort Ruard R, Gischler Saskia, Hagoort Jacobus, van Dijk Monique
1Intensive Care Unit and Department of Pediatrics and Pediatric Surgery, Erasmus MC-Sophia Children's Hospital, Rotterdam, The Netherlands. 2Department of Practical Theology, VU University Amsterdam, Amsterdam, The Netherlands. 3Division of Neonatology, Department of Pediatrics, Erasmus MC-Sophia's Children's Hospital, Rotterdam, The Netherlands.
Pediatr Crit Care Med. 2016 May;17(5):e212-7. doi: 10.1097/PCC.0000000000000682.
Health professionals in PICUs support both child and parents when a child's death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. This study explores in what sense physical aspects of end-of-life care in the PICU influence the parent-child relationship.
Retrospective, qualitative interview study.
Level 3 PICU in Erasmus Medical Center in the Netherlands.
Thirty-six parents of 20 children who had died in this unit 5 years previously.
Parents vividly remembered the damage done to the child's physical appearance, an inevitable consequence of medical treatment. They felt frustrated and hurt when they could not hold their child. Yet they felt comforted if facilitated to be physically close to the dying child, like lying with the child in one bed, holding the child in the hour of death, and washing the child after death.
End-of-life treatment in the PICU presents both a barrier and an opportunity for parents to stay physically connected to their child. Parents' experiences suggest that aspects of physicality in medical settings deserve more attention. Better understanding of the significance of bodily aspects-other than pain and symptom management-improves end-of-life support and should be part of the humane approach to families.
当儿童濒临死亡时，重症监护病房（PICU）的医护人员既要照顾孩子，也要支持其父母。父母渴望与垂死的孩子保持联系，但高科技环境和治疗需求使得他们难以在身体上靠近孩子。本研究探讨了PICU临终关怀的身体层面在何种意义上影响亲子关系。
回顾性定性访谈研究。
荷兰伊拉斯谟医疗中心的三级PICU。
36位父母，他们的20个孩子于5年前在该科室死亡。
父母们清晰地记得医疗对孩子外貌造成的损害，这是治疗不可避免的后果。当他们无法抱住孩子时，会感到沮丧和受伤。然而，如果能被协助与垂死的孩子在身体上靠近，比如与孩子同床而卧、在孩子死亡时抱着孩子以及在孩子死后为其清洗身体，他们会感到安慰。
PICU的临终治疗对父母而言既是与孩子保持身体联系的障碍，也是一个机会。父母的经历表明，医疗环境中的身体层面值得更多关注。更好地理解除疼痛和症状管理之外身体层面的重要性，有助于改善临终关怀，且应成为关爱家庭的人文方法的一部分。
