The complexity of the decision-making process from dialysis withdrawal to death

Abstract

The working group of the Francophone Society of Nephrology, Dialysis, and Transplantation (SFNDT) recently published a guide for the reasoned adaptation of therapies (ART) in nephrology, which takes up the legal framework of the Claeys–Leonetti Law (2016) and highlights the specificities of palliative care in the context of a long-term chronic illness. In this literature review—drawing from both medical research and the humanities and social sciences—we offer a complementary perspective on the complex decision-making process from dialysis withdrawal to death (DWD), in the sense of sociologist and philosopher Edgard Morin’s concept of complex thought. Quantitative studies, both national and international, highlight the role of cultural differences between countries as well as the influence of legal frameworks on DWD, but other factors are also at play. Patient characteristics associated with DWD as well as differences in regional practices are identified. Qualitative studies and research in the humanities and social sciences further explore the experiences of caregivers, marked by uncertainty and complexity, as decisions unfold among patients, families or caregivers, and health care professionals. This literature review serves as a foundation for an ongoing mixed methods study on the variability of DWD practices in France.