Rose Katie
Narrat Inq Bioeth. 2014 Spring;4(1):43-6. doi: 10.1353/nib.2014.0018.
It's common in this world, for diagnoses to be confused. This grey, oblique world is the "World of Brain Tumors" from which these narratives are written, a world I entered when a tangerine-sized tumor was found on my temporal lobe. Each narrative illustrates this world in which everything is covered in a thick film rendering things once obvious, now unknown. Parents are asked to choose treatment plans for their children, plans that will inevitably alter their child's quality of life but in ways they cannot determine or even imagine. Parents are asked to play God. Most of the parents who share their stories in this collection, parents of PBT (pediatric brain tumor) patients have to walk the line of trying to not disrupt their relationships with their physicians, wanting the best for their child, and facing the decision to follow their gut or go with advised treatment plans.
在这个世界上,诊断混淆的情况很常见。这个灰暗、倾斜的世界就是“脑肿瘤世界”,这些故事就出自这个世界,当我颞叶发现一个橘子大小的肿瘤时,我就进入了这个世界。每个故事都描绘了这样一个世界,一切都笼罩在一层厚厚的迷雾中,曾经显而易见的事情如今变得未知。父母们被要求为他们的孩子选择治疗方案,这些方案将不可避免地改变孩子的生活质量,但方式却是他们无法确定甚至无法想象的。父母们被要求扮演上帝的角色。在这个文集里分享故事的大多数父母,即小儿脑肿瘤(PBT)患者的父母,必须在努力不破坏与医生的关系、希望孩子得到最好的治疗,以及面临是听从自己的直觉还是遵循建议的治疗方案这一决定之间小心翼翼地前行。