Medical Humanities Works

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Browsing Medical Humanities Works by Author "Hartsock, Jane A."

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    How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
    (BMJ, 2018) Kirkman, Anna Obergfell; Hartsock, Jane A.; Torke, Alexia M.; Medical Humanities and Health Studies, School of Liberal Arts
    Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent’s preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
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    Liver Allocation to Non-Citizen Non-Residents: An Ethical Framework for a Last-In-Line Approach
    (Wiley, 2016-06) Hartsock, Jane A.; Ivy, Steven; Helft, Paul R.; Department of Medicine, IU School of Medicine
    The incidence of non-U.S. citizen non-U.S. resident patients coming to the United States specifically for deceased donor liver transplantation raises compelling ethical questions that require careful consideration. The inclusion of these often financially and/or socially privileged patients in the pool of potential candidates for an absolutely scarce and life-saving liver transplant may exacerbate disparities already existing in deceased donor liver allocation. In addition, their inclusion on organ transplant waiting lists conflicts with recognized ethical principles of justice and reciprocity. Moreover, preliminary data suggest that public awareness of this practice could discourage organ donation, thereby worsening an already profound supply–demand gulf. Finally, U.S. organ allocation policies and statutes are out of step with recently promulgated international transplant guidelines, which prioritize self-sufficiency of organ programs. This article analyzes each of these ethical conflicts within the context of deceased donor liver transplantation and recommends policy changes that align the United States with international practices that discourage this scenario.