Midson Rosie, Carter Bernie
End of Life Care Manager & Joint National Manager Child Death Helpline, Great Ormond Street Hospital NHS Trust, London, UK.
J Child Health Care. 2010 Mar;14(1):52-66. doi: 10.1177/1367493509347060.
Much of the work in children's hospitals is rightly focused on treatments aimed towards cure but this means that death is often seen as a failure and, as such, it may not be discussed or acknowledged as a possibility until very late in a child's stay in hospital. However, this reluctance can deny the child and their family the opportunity to be informed, prepare and make choices. A survey of the care received by parents whose child had died in a children's tertiary treatment centre led to a greater understanding of the parents' experiences and the ways in which care could be enhanced. Parents talked of the way in which the geography of the hospital could be disruptive and dislocating and yet they often had no place to be alone or in private. Communication was identified as a core issue with many parents being positive about the quality and timing of communication. However, other parents expressed a preference for more preparation about the possibility that their child might die. Some parents had positive experiences of follow-up visits after their child's death, whilst others remained frustrated and some felt this visit had made them re-live the experiences. The importance of kind, supportive and consistent care was clearly evidenced by the parents when they spoke about their feelings and emotions. The findings helped to develop and implement an End of Life Care Pathway and a pathway tool which aimed to enhance parents' experiences and to improve care. A further survey was triggered by the concern that the pathway was not being fully utilized and it became apparent that, despite the tool, staff were still reluctant to provide anticipatory guidance, even though many practical aspects of care scored well. The need for good communication that prepares parents for the eventuality that their child might or will die is one of the clearest lessons from the second survey. This is important as anticipatory guidance opens up parents - and children's - choices, and their opportunities to be involved and make decisions. More work needs to be undertaken in relation to continuing education of clinical staff, raising awareness of the resources available and empowering families by providing information.
儿童医院的许多工作理所当然地集中在旨在治愈的治疗上，但这意味着死亡往往被视为一种失败，因此，在孩子住院的后期才可能会讨论或承认死亡的可能性。然而，这种不情愿可能会剥夺孩子及其家人获得信息、做好准备和做出选择的机会。一项对孩子在儿童三级治疗中心死亡的家长所接受护理的调查，使人们对家长的经历以及如何改善护理有了更深入的了解。家长们谈到医院的布局可能会造成干扰和混乱，然而他们往往没有独处或私密的空间。沟通被认为是一个核心问题，许多家长对沟通的质量和时机持肯定态度。然而，其他家长则表示希望能更多地为孩子可能死亡的可能性做好准备。一些家长在孩子死后的随访中有积极的体验，而另一些家长仍然感到沮丧，还有一些家长觉得这次随访让他们再次经历了那些事情。家长们在谈到自己的感受和情绪时，清楚地证明了亲切、支持和持续护理的重要性。这些发现有助于制定和实施临终关怀路径及路径工具，旨在改善家长的体验并提高护理质量。由于担心该路径未得到充分利用，引发了另一项调查，结果发现，尽管有工具，但工作人员仍然不愿提供预期指导，尽管许多护理的实际方面得分很高。第二次调查最明显的教训之一是，需要进行良好的沟通，让家长为孩子可能或将会死亡的最终结果做好准备。这很重要，因为预期指导为家长和孩子提供了选择，以及他们参与和做出决定的机会。在临床工作人员的继续教育、提高对可用资源的认识以及通过提供信息增强家庭能力方面，还需要开展更多工作。
