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BACKGROUND AND OBJECTIVES: Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS: In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child’s death. Using a hybrid deductive–inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS: A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of “bad news” encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS: Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model (“Lend an EAR”) to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs.
BACKGROUND AND OBJECTIVES: Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS: In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child’s death. Using a hybrid deductive–inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS: A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of “bad news” encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS: Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model (“Lend an EAR”) to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs.
El propósito de este trabajo es profundizar en los aspectos éticos que experimenta el equipo de salud cuando reciben la indicación de limitar el esfuerzo terapéutico o la orden de no reanimar. Desde un paradigma interpretativo, cualitativo y con un enfoque de análisis de contenido, se realizó un proceso basado en tres fases: preanálisis en el que se identificaron las categorías, la proyección del análisis y el análisis inductivo. Durante 2023, se realizaron entrevistas en el entorno clínico de un hospital de alta complejidad en Chile a 56 miembros de equipos de salud de unidades críticas y urgencias, de las que emergieron cuatro categorías: a) riesgo de vulnerar los derechos de los pacientes al utilizar la orden de no reanimar, y limitación del esfuerzo terapéutico; b) brecha en la interpretación del marco legal que aborda la atención y cuidado de pacientes al final de la vida, o con enfermedades terminales por parte del equipo de salud; c) conflictos éticos de la atención al final de la vida; y d) el cuidado eficiente o el cuidado holístico en pacientes con enfermedad terminal. Existen brechas importantes en la formación en bioética y aspectos del buen morir en los equipos de salud que se enfrentan a la orden de limitar el esfuerzo terapéutico y no reanimar. Se sugiere capacitar al personal, y trabajar una guía de consenso para abordar los aspectos éticos del buen morir.
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