Supplementing living kidney transplantees' medical records with donor- and recipient-narratives

Abstract

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.

Keywords: Bioethics; Deterrents; Donors; Medical records; Narratives; Preemptive kidney transplantation.