Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families’ Counter-discourse for Recuperative Ethos

Abstract

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.