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被选中的和未被选中的:肝移植资格如何影响晚期肝病患者的生活体验。

The chosen and the unchosen: How eligibility for liver transplant influences the lived experiences of patients with advanced liver disease.

机构信息

Center for Innovation to Implementation, VA Palo Alto Health Care System, 795 Willow Road (152-MPD), Menlo Park, CA, 94025, USA.

Department of Sociology, University of Houston-Clear Lake, 2700 Bay Area Boulevard, Houston, TX, 77058, USA; VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, 2450 Holcombe Blvd Suite 01Y, Houston, TX, 77021, USA.

出版信息

Soc Sci Med. 2022 Jul;305:115113. doi: 10.1016/j.socscimed.2022.115113. Epub 2022 Jun 4.

Abstract

Advanced liver disease is often uncurable and fatal. Liver transplant is the only curative option for patients with advanced, irreversible liver disease, but the need for new livers far exceeds the supply. Patients with the greatest need as well as the greatest likelihood of benefit, based on a complex array of biomedical and psychosocial considerations, are prioritized for transplant. The opportunity to receive a life-saving surgery no doubt has enormous consequences for patients and their healthcare providers, as does the absence of that opportunity. But these consequences are poorly characterized, especially for patients deemed poor candidates for liver transplant. Through in-depth interviews with patients living with advanced liver disease and the providers who care for them, we explore how eligibility status affects illness experiences, including patients' interactions with clinicians, knowledge about their disease, expectations for the future, and efforts to come to terms with a life-limiting illness. We describe how the clinical and social requirements needed to secure eligibility for liver transplant lend themselves to a clinical and cultural logic that delineates "worthy" and "unworthy" patients. We describe how providers and candidates discuss the possibility of moral redemption for such patients through transplant surgeries, a discourse notably absent among patients not eligible for transplant.

摘要

晚期肝病往往无法治愈且致命。肝移植是晚期不可逆肝病患者的唯一治愈选择,但新肝脏的需求远远超过供应。根据一系列复杂的生物医学和心理社会考虑因素,最需要和最有可能受益的患者被优先考虑进行移植。有机会接受挽救生命的手术无疑对患者及其医疗保健提供者产生巨大影响,而没有这种机会也是如此。但是,这些后果的特征描述很差,特别是对于被认为不适合进行肝移植的患者。通过对患有晚期肝病的患者和照顾他们的提供者进行深入访谈,我们探讨了资格状况如何影响疾病体验,包括患者与临床医生的互动、对疾病的了解、对未来的期望以及努力接受生命有限的疾病。我们描述了为确保肝移植资格所需的临床和社会要求如何符合区分“有价值”和“无价值”患者的临床和文化逻辑。我们描述了提供者和候选者如何通过移植手术讨论这种患者获得道德救赎的可能性,而对于不符合移植条件的患者,这种讨论明显不存在。

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