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.

Discipline-Specific Perspectives on Caring for Babies with Trisomy 13 or 18 in the Neonatal Intensive Care Unit

“…Historic stigma surrounding the diagnosis had presented these genetic conditions as universally fatal, and thus the idea of medical interventions or technology escalations is felt by medical staff as counter to what was previously held as medical dogma. 45 While prognosis for these infants and children remains uncertain and variable based on comorbidities, 9 the historic mantra of “incompatible with life” printed in textbooks has proved physiologically false and may be shifting with survivability patterns. 7 23 The photos of babies with these diagnoses in textbooks were black and white as were the historic provider perspectives.…”

Conducta médica frente al diagnóstico prenatal de trisomía 18: ¿se aproxima un cambio de paradigma?

“…Resulta imprescindible la adecuada formación del especialista sobre el modo de comunicar un diagnóstico desfavorable. En múltiples estudios que analizan la comunicación del diagnóstico de síndrome de Edwards, se destaca la relevancia del oportuno entrenamiento y de la competencia para hacerlo (6,(28)(29)(30)(31)(32).…”

“…Esto es particularmente importante en una patología poco frecuente como la trisomía 18, ya que es probable que los padres nunca hayan recibido información sobre esa enfermedad. Como mencionan Thorvilson y Copeland, en esta patología específica, a diferencia de la trisomía 21, el conocimiento de los padres suele ser nulo (6).…”

“…La prevalencia de la enfermedad es de 1 cada 6000-8000 nacidos vivos (3,(6)(7)(8)(9)(10)(11). El pronóstico de la enfermedad es variable, ya que depende del grado de afectación de los órganos vitales.…”

Ethical considerations for cardiac surgical interventions in children with trisomy 13 and trisomy 18

“…Strategies to explore and achieve management consensus are important, including consultation with clinical ethics consultants and palliative care consultants. Several studies underscore the potential for clinician bias to impact patient care; clinician teams should consider evidence‐based, consistent protocols to standardize clinical decision‐making about these patients from the moment that they present for care (Arthur & Gupta, ; Thorvilson & Copeland, ). The study of Kaempf et al, regarding treatment decisions for extremely premature infants, suggest that clinical protocols for ethically complex medical care can and do make prenatal and postnatal care more medically and ethically consistent (Dirksen, Kaempf, Tomlinson, & Schmidt, ).…”