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The Portrait Of A Dying Child

INDIAN JOURNAL OF PALLIATIVE CARE(2019)

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摘要
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 Hedda Gabler. 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.
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关键词
Oncology, paediatric, palliative care
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