A study to describe the health trajectory of patients with advanced renal disease who choose not to receive dialysis

BACKGROUND: Some patients with end-stage renal failure (ESRF) are unlikely to benefit from dialysis and conservative management (CM) is offered as a positive alternative. Understanding the trajectory of illness by health care professionals may improve end-of-life care. METHODS: We aimed to describe the trajectory of functional status within our CM population through a prospective, observational study using the objective Timed Up and Go (TUG) test and subjective Barthel Index (BI) and health-related quality of life (HRQoL) [EuroQol 5D-5L (EQ-5D-5L)] measurements and correlating them with demographic and laboratory data and with sentinel events. RESULTS: There was a significant increase in TUG scores over the 6 months prior to death {2.24 [95% confidence interval (CI) 1.16–4.32], P = 0.017} and a significant decrease in EQ-5D-5L [−0.19 (95% CI −0.33 to −0.06), P = 0.006]. The only significant associations with mortality were serum albumin [hazard ratio (HR) 0.81 (95% CI 0.67–0.97), P = 0.024] and male gender [HR 5.94 (95% CI 1.50–23.5), P = 0.011]. CONCLUSIONS: We have shown there is a significant decline in functional status in the last 6 months before death in the CM population. Of interest, there was a significant relationship of lower serum albumin with functional decline and risk of death. We hope that with improved insight into disease trajectories we can improve our ability to identify and respond to the changes in needs of these patients, facilitate complex and sensitive end-of-life discussions and improve end-of-life care.