End-of-Life Care Patterns by Transplant Eligibility Among Patients with End Stage Kidney Disease

Adults with end stage kidney disease (ESKD) often spend years awaiting kidney transplantation, during which transplant listing status frequently changes from active to inactive - a phase marked by evolving expectations. The relationship of these changes to healthcare utilization and end-of-life care is poorly characterized.

To compare healthcare utilization and end-of-life outcomes by transplant eligibility and transplant listing status (active vs inactive) changes during the final year of life.

We conducted an observational study of 394 adults with ESKD (active, n=69; inactive, n=325) who underwent kidney transplant evaluation in a large healthcare system between 1/1/2017 and 6/30/2023, and died without transplantation by 6/30/2024.

In the last year of life, patients had a median of two emergency department visits (interquartile range [IQR] 1-5), two hospitalizations (IQR 1-4), and 25 cumulative hospital days (IQR 1-51). Overall, 61% died in the hospital and 59% remained full code at death, and 18% were referred to hospice (median stay four days, IQR 1-8). Inactive status was associated with more emergency department visits (median 2 [IQR 1-5] vs 2 [IQR 0-3]; p=0.011) and hospitalizations (median 3 [IQR 1-5] vs 2 [IQR 1-4]; p=0.032) than active status, without differences in end-of-life outcomes. Periods of inactive status were associated with approximately two-fold higher hospitalization rates and greater time hospitalized than active periods.

Adults with ESKD on dialysis experience intensive end-of-life care regardless of transplant eligibility. Switches to inactive status may represent a clinical inflection point to address prognostic understanding and transplant expectations.