End-stage renal disease is one of the most challenging chronic diseases that places patients on the path of making critical decisions about their treatment modality (hemodialysis, peritoneal dialysis, or kidney transplantation). Despite the emphasis of national and international laws on the patient’s right to informed participation in the treatment process, the findings of a qualitative study in Iran show that most dialysis patients do not have a role in choosing their dialysis type and are not consulted about it. This gap serves as a significant barrier to patients’ quality of life and the central ethics of the health system. Analysis of the lived experiences of these patients has identified three key factors as the root of this problem: 1) an information gap (lack of awareness of available options and their consequences), 2) fear and helplessness in the face of the unknowns of the disease and treatment, and 3) a physician-centered culture that limits the space for active dialogue.
Based on this evidence, this policy brief proposes three strategic options to overcome this challenge: developing a national shared decision-making guideline as the legal basis for change, developing a national multimedia educational platform to empower patients and fill the information gap, and, finally, setting up specialized dialysis method consultation clinics. The first two options are prioritized for implementation, which complement each other and simultaneously target both the culture of the health system and the level of patient awareness.