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一个垂死儿童的画像。

The Portrait of a Dying Child.

作者信息

Pravin R R, Enrica Tan Ee Kar, Moy Tan Ah

机构信息

Department of General Paediatrics, Haematology/Oncology Service, KK Women's and Children's Hospital, Singapore.

Department of Paediatric Subspecialties, Haematology/Oncology Service, KK Women's and Children's Hospital, Singapore.

出版信息

Indian J Palliat Care. 2019 Jan-Mar;25(1):156-160. doi: 10.4103/IJPC.IJPC_133_18.

Abstract

The portrait of a dying child is an homage to a child's journey from initial diagnosis to the terminal stages of illness in metastatic neuroblastoma, raising the critical question of the importance of defining a beautiful death - a concept I first came across as a literature student in Henrik Ibsen's renowned tragedy . In this article, we discuss a case study of a child named Peter (real names have been changed to maintain the confidentiality of the patient) and his family, whom I met during my oncology rotation as a junior pediatric resident, and various aspects of care - ranging from symptom management, pain control, the family as an emotional and spiritual unit and complications of metastatic disease. Interlaced amidst references of current practices related to pain control and palliation of symptoms are quotes from Dr Myra BluebondLangner's books and a personal encounter with the child to construct the child as a child and not another dying patient. The enigma of the definition of a beautiful death is also discussed from the patient and the family's point of view. An ideal medical death would be one without pain and with optimal symptom control; however, a beautiful death is so much more - encompassing a peaceful passing surrounded not by machines but by happiness around and at heart. We hope this article would encourage pediatricians to continue to practice pediatric palliative care in the daily setting when dealing with critically ill patients or children in their final stages of life.

摘要

一幅垂死儿童的画像,是对一名患有转移性神经母细胞瘤的儿童从最初诊断到疾病晚期历程的致敬,它引出了一个关键问题:定义美好死亡的重要性——这一概念我最初是作为文学专业学生在亨利克·易卜生著名的悲剧作品中遇到的。在本文中,我们讨论了一个名为彼得(为保护患者隐私,真实姓名已更改)的孩子及其家人的案例研究,这是我在担任儿科住院医师初级阶段肿瘤学轮转期间遇到的,还探讨了护理的各个方面——从症状管理、疼痛控制、作为情感和精神单元的家庭以及转移性疾病的并发症。在关于当前疼痛控制和症状缓解实践的论述中,穿插引用了迈拉·布卢邦德 - 兰格纳博士书中的内容以及与这个孩子的亲身接触,将这个孩子塑造为一个孩子,而非另一个垂死的患者。还从患者及其家人的角度讨论了美好死亡定义的谜团。理想的医疗死亡应该是没有痛苦且症状得到最佳控制的;然而,美好死亡的内涵远不止于此——它意味着平静地离世,周围环绕的不是机器,而是身边和内心的幸福。我们希望本文能鼓励儿科医生在日常工作中,面对重症患者或处于生命最后阶段的儿童时,继续践行儿科姑息治疗。

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The Portrait of a Dying Child.一个垂死儿童的画像。
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