The chosen and the unchosen: How eligibility for liver transplant influences the lived experiences of patients with advanced liver disease.
The chosen and the unchosen: How eligibility for liver transplant influences the lived experiences of patients with advanced liver disease.
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选择和未选择：肝移植的资格如何影响晚期肝病患者的生活经历。
DOI：
10.1016/j.socscimed.2022.115113
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发表时间：
2022-07
影响因子：
5.4
通讯作者：
Naik, Aanand D.
中科院分区：
文献类型：
--
作者：
Gray, Caroline;Arney, Jennifer;Clark, Jack A.;Walling, Anne M.;Kanwal, Fasiha;Naik, Aanand D.
晚期肝病往往无法治愈且致命。对于患有晚期、不可逆肝病的患者来说，肝移植是唯一的治愈选择，但对新肝脏的需求远远超过供应。基于一系列复杂的生物医学和社会心理因素考量，最需要且最有可能受益的患者会被优先考虑进行移植。获得挽救生命的手术机会无疑对患者及其医疗服务提供者具有重大影响，没有这个机会也是如此。但这些影响的特征尚不明确，尤其是对于那些被认为不适合进行肝移植的患者。通过对晚期肝病患者及其医护人员的深入访谈，我们探究了资格状态如何影响患病体验，包括患者与临床医生的互动、对自身疾病的了解、对未来的期望以及接受绝症的努力。我们描述了获得肝移植资格所需的临床和社会要求如何形成一种区分“值得”和“不值得”患者的临床和文化逻辑。我们描述了医护人员和候选患者如何讨论通过移植手术让这类患者获得道德救赎的可能性，而这种讨论在没有资格进行移植的患者中明显缺失。
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.
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