Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families' Counter-discourse for Recuperative Ethos
Title
Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families' Counter-discourse for Recuperative Ethos
Creator
Thorvilson M J; Copeland A J
Identifier
Publisher
The Journal of medical humanities
Date
2018
Subject
psychology; child parent relation; human; Edwards syndrome; treatment outcome; blogging
Description
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.
Rights
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Citation List Month
March 2019 List
URL Address
Collection
Citation
Thorvilson M J; Copeland A J, “Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families' Counter-discourse for Recuperative Ethos,” Pediatric Palliative Care Library, accessed April 25, 2024, https://pedpalascnetlibrary.omeka.net/items/show/16110.