Aim: To report the health care burden during the last 1000 days before death for people with chronic kidney disease (CKD).

Background: People dying with CKD are likely to have progressive decline in the years preceding death, often necessitating periods of hospitalisation away from home.

Methods: We considered the final 1000 days prior to death for all deaths between 1/1/2004 and 31/12/2017. We used a linked dataset that included any adult with a creatinine test during the study period (n=460,737; 86.8% of the state's adult population). We defined CKD as two measures of eGFR<60mL/min/1.73m2, at least 3-months apart.

Results: Of the 55,399 deaths, 24,970 (45.1%) met the criteria for CKD, of which 509 were treated with kidney replacement therapy. Compared to those without CKD, people dying with CKD were older, more likely to be female and have diabetes, dementia or cardiovascular disease.In the last 1000 days preceding death, people with CKD (compared to those dying without CKD) were more likely to be hospitalised (Relative Risk (RR) 1.82, range 1.2 – 2.1 depending on proximity to death), spend a greater number of days in hospital (mean 39.5 vs. 34.1 days), undergo more procedures (RR 1.33) and require greater allied health input (RR 1.58). Heart failure was the commonest diagnosis at emergency or intensive care presentations, but such presentations were not more likely than in those without CKD. Place of death was more likely to be in hospital (RR 1.29), under acute care rather than palliative care (RR 3.5).

Conclusion: The last 1000 days with chronic kidney disease are marked by considerable personal burdens including increasing comorbidities and hospitalisation. This life stage deserves recognition and appropriate support.