Hambro Alnæs Anne
Centre for Medical Ethics, Faculty of Medicine, Institute of Health and Society, University of Oslo, Oslo, Norway.
Med Health Care Philos. 2018 Dec;21(4):489-505. doi: 10.1007/s11019-017-9822-x.
Norway provides total social welfare coverage for organ transplantations, including free immunosuppressive medication and prepaid life-long follow up for both recipients and donors. Despite these benefits the proportion of living kidney donors (LKD) has in recent years declined from around 40% (2011) of all kidney transplantations to 24% (2016). This study suggests harnessing patient- and donor-narratives as a tool for addressing the current fall in donation rates. The hospital records of 18 recipient/donor dyads were compared with patient and donor accounts elicited in semi-structured interviews. Narratives afford a pertinent supplement to the primarily biomedical and technical information stored in medical records. Even in condensed form, the messages embedded in narratives contribute to a 'thicker' understanding of the complexity of living kidney donation (LKD)-decisions. Narratives represent a source of education for referring-nephrologists wishing to deepen their evaluation skills and avoid making decisions based on insufficient insight into patients' and potential donors' values and life-situation. Recipients' and donors' unedited accounts of their motivations, worries, doubts and expectations afford a revealing and edifying supplement to the primarily biomedical and technical information stored in medical records. In narratives, the predicaments and dilemmas surrounding LKD become visible and debatable and can serve as support for future donors, recipients and the nephrologists responsible for evaluation-conclusions. Generating narratives raises a number of practical, epistemic and normative challenges.
挪威为器官移植提供全面的社会福利覆盖,包括免费的免疫抑制药物以及为受者和供者提供终身预付费随访。尽管有这些福利,但近年来活体肾供者(LKD)的比例已从约占所有肾移植的40%(2011年)降至24%(2016年)。本研究建议利用患者和供者的叙述作为解决当前捐赠率下降问题的一种工具。将18对受者/供者二元组的医院记录与在半结构化访谈中获得的患者和供者的描述进行比较。叙述为存储在医疗记录中的主要生物医学和技术信息提供了相关补充。即使是浓缩形式,叙述中蕴含的信息也有助于更深入地理解活体肾捐赠(LKD)决策的复杂性。叙述是希望提高评估技能并避免基于对患者和潜在供者价值观及生活状况缺乏充分了解而做出决策的转诊肾病学家的教育来源。受者和供者对其动机、担忧、疑虑和期望的未经编辑的描述,为存储在医疗记录中的主要生物医学和技术信息提供了具有启发性和教育意义的补充。在叙述中,围绕LKD的困境和两难境地变得可见且可辩论,并可为未来的供者、受者以及负责评估结论的肾病学家提供支持。生成叙述引发了一些实际、认知和规范方面的挑战。