Thorvilson Megan J, Copeland Adam J
Mayo Clinic, 200 1st St. SW, Rochester, MN, 55905, USA.
Luther Seminary, 2481 Como Ave., St. Paul, MN, 55108, USA.
J Med Humanit. 2018 Sep;39(3):349-360. doi: 10.1007/s10912-017-9436-6.
Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with life" even though some children with the condition live for several years. This paper considers parents' response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregrounding Cathryn Molloy's recuperative ethos theory (2015), we find that parents demonstrate recuperative ethos in response to physicians' descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric. We argue that, by using language such as "incompatible with life," physicians distance themselves from families, creating not care, but the very gulf that requires recuperation. We conclude that medical professionals would do well to engage with the trisomy 18 community-including learning from blogs and online forums- employ palliative care practices, and seek more accurate, descriptive language that is compatible with care.
孩子被诊断患有诸如18三体综合征等严重疾病的父母，首先会依赖医学界给出准确的描述和预后情况。然而，就18三体综合征而言，许多家庭被告知这种疾病“与生命不相容”，尽管有些患有这种疾病的孩子能活好几年。本文通过研究那些被诊断出患有18三体综合征孩子的父母所写的博客，来探讨父母对当前关于18三体综合征医学论述的反应。运用诠释性人文主义阅读方法，并突出凯瑟琳·莫洛伊的恢复性气质理论（2015年），我们发现父母在回应医生对18三体综合征的描述时展现出恢复性气质，尤其是在涉及生存、医学化语言以及宗教和/或精神性言辞的修辞方面。我们认为，医生使用诸如“与生命不相容”这样的语言，使自己与家庭产生距离，造成的不是关怀，而是需要弥合的鸿沟。我们得出结论，医学专业人员最好与18三体综合征群体互动——包括从博客和在线论坛中学习，采用姑息治疗方法，并寻求更准确、与关怀相符的描述性语言。
