To dialyse or delay: a qualitative study of older New Zealanders’ perceptions and experiences of decision-making, with stage 5 chronic kidney disease

BACKGROUND Issues related to renal replacement therapy in elderly people with end stage kidney disease (ESKD) are complex. There is inadequate empirical data related to: decision-making by older populations, treatment experiences, implications of dialysis treatment and treatment modality on quality of life, and how these link to expectations of ageing. STUDY POPULATION Participants for this study were selected from a larger quantitative study of dialysis and predialysis patients aged 65 years or older recruited from three nephrology services across New Zealand. All participants had reached chronic kidney disease (CKD) stage 5 and had undergone dialysis education but had not started dialysis or recently started dialysis within the past 6 months. METHODOLOGY Serial qualitative interviews were undertaken to explore the decision-making processes and subsequent treatment experiences of patients with ESKD.Analytical approach: A framework method guided the iterative process of analysis. Decision-making codes were generated within NVivo software and then compared with the body of the interviews. RESULTS Interviews were undertaken with 17 participants. We observed that decision-making was often a fluid process, rather than occurring at a single point in time, and was heavily influenced by perceptions of oneself as becoming old, social circumstances, life events and health status. LIMITATIONS This study focuses on participants' experiences of decision-making about treatment and does not include perspectives of their nephrologists or other members of the nephrology team. CONCLUSIONS Older patients often delay dialysis as an act of self-efficacy. They often do not commit to a dialysis decision following predialysis education. Delaying decision-making and initiating dialysis were common. This was not seen by participants as a final decision about therapy. Predialysis care and education should be different for older patients, who will delay decision-making until the time of facing obvious uraemic symptoms, threatening blood tests or paternalistic guidance from their nephrologist. TRIAL REGISTRATION NUMBER Australasian Clinical Trials Registry ACTRN 12611000024943; results.