Experiences of Family Caregivers of Older Patients with End-Stage Kidney Disease from Dialysis Initiation to End-of-Life Care: An Exploratory Qualitative Descriptive Study

Background/Objective: Older patients with end-stage renal disease who receive dialysis often discontinue treatment before the end of their lives. However, the trajectory of family caregiving in this specific context remains under-researched. This study explored the experiences of family members caring for older patients with end-stage kidney disease (ESKD), from the introduction of dialysis to end-of-life care. Methods: This qualitative descriptive study included three family members caring for older patients with end-stage renal disease who were undergoing dialysis in Japan. Data were collected through semi-structured, one-on-one interviews and analyzed using inductive qualitative content analysis within a qualitative descriptive design. Results: The results identified seven categories regarding the family’s experience from dialysis initiation to end-of-life care: Key findings, particularly regarding the terminal phase, included ‘shock of dialysis treatment discontinuation’, ‘last moments shared with the patient’, ‘nostalgic memories of the patient over time, and ‘reflections on end-of-life care for the patient.’ Families described a process wherein the sudden need for proxy decision-making, often without prior discussion, was linked to feelings of regret. Conclusions: The findings describe the continuous experiences of family caregivers in the Japanese context. These exploratory insights suggest that the absence of early Advance Care Planning may contribute to caregiver distress during the withdrawal phase. The results highlight the need for culturally sensitive renal supportive care that fosters communication and understanding of patients’ wishes to mitigate the ethical burdens on families.