End stage renal disease: a new trajectory of functional decline in the last year of life

Objectives: To determine the functional trajectory in the last year of life in end-stage renal disease managed without dialysis.Design: Longitudinal cohort study of functional status over time and toward death.Setting: Three renal units in the United Kingdom.Participants: Patients with Stage 5 chronic kidney disease managed conservatively (without dialysis).Measurements: The main outcome measure was functional status, measured using the Karnofsky Performance Scale.Results: Seventy-five participants (mean age 80.7, 62% response rate) recruited and followed up monthly for up to 2 years (median 8-month follow-up, range 1–23 months). Forty-nine (66%) died during follow-up. Those who died had similar distribution of age, ethnicity, primary renal pathology, and comorbidity as those still alive at study end. Analysis according to time before death revealed that functional status remained stable during the last year of life but declined steeply in the last month of life.Conclusion: This distinctive renal trajectory, reported here for the first time, contrasts with that previously described in other conditions. This has important clinical implications—the steep functional decline indicates that healthcare services need to be rapidly responsive to changing needs in this population as function declines in the last months and weeks of life.