Shared patient and provider values in end-stage renal disease decision making: Identifying the tensions

Abstract Objective To examine concordance and tensions in values among stakeholder groups across the shared decision making process for end-stage renal disease patients treated with hemodialysis. Methods A thematic analysis of transcripts from three stakeholder groups: hemodialysis patients (2 groups, n = 17), nephrologists (1 group, n = 9), and non-physician providers (dietitians, social workers, and registered nurses) (1 group, n = 8). A framework of decision-making components (communication, information, decision, behavior, and outcome) guided analysis of values within and across groups. Results Shared values included communication that informed patients and involved family; information about function, trajectory, life context, and patient experience; behavior to manage diet; and outcomes of function, safety, and survival. Identified thematic tensions in patient-provider values were: personalized vs. routinized communication; shared vs. separate information; managed vs. adherent behavior; and participating vs. protected outcome. Patient behavior emerged as a contested area of control. Conclusion Emphasizing shared values and bridging values conflicts may ease tensions surrounding self-care behavior by facilitating discussions about diet, medications, and consistent dialyzing. Practice implications More individualized information needs to be delivered to patients in a personalized communication approach that can still be achieved within a busy dialysis clinic setting.