Hearing the silence of patients who did not receive an anticipated organ transplant: "being second in line".

Abstract

Admitting more than one potential organ recipient for a single available kidney is a common practice, resulting in one patient leaving the hospital without an anticipated organ transplant. The purpose of this study was to understand the life-world of end stage renal disease (ESRD) patients and their family members who experienced the phenomenon of "being second in line" for an anticipated renal transplant. After informed consent was given, indepth, face-to-face interviews were conducted with ESRD patients or family members. Interviews with 18 ESRD patients or family members who had experienced the phenomenon of leaving the hospital without an anticipated organ transplant were included in this study. The study was conducted in an mid-South university-based urban clinic that provided a variety of treatment services for dialysis and transplant patients. The narratives were tape recorded and transcribed verbatim by the researchers or a trained medical secretary. Hermeneutical analysis was used to bring forward themes found in these narratives. These narratives allowed patients and families to describe for themselves the lived experience of this event. Themes from the narratives included (a) knowing and not knowing; (b) having high hopes for a life without dialysis; (c) wanting the transplant, but not at the expense of someone else; and (d) having no voice for your experience. The final theme presented itself in three ways: (a) silencing the experience, (b) reframing by others as a "learning experience," and (c) reframing by others as a "misunderstanding." Data from this study do not support stopping the procedure of notifying more than one potential organ recipient about an available kidney, only that this is an important and meaningful experience unique to ESRD patients and their families.