A single-center review of the death notification form: Discontinuing dialysis before death is not a surrogate for withdrawal from dialysis

Background: Form 2746, the death notification form, is the primary source of data on cause of death for patients with end-stage renal disease in the United States. Since the revised form was introduced in May 1990, withdrawal from dialysis is no longer a specific cause of death code. A separate section of form 2746 asks whether dialysis was discontinued before death. Based on US Renal Data System data from form 2746, more than 20% of dialysis patients discontinue dialysis before death. It is not known whether stopping dialysis is a proximate cause of death in these patients. Methods: Two hundred twelve death notification forms completed between January 1, 1993, and December 31, 2000, from a single dialysis center were reviewed for location of death, primary and secondary causes of death, and whether dialysis therapy was discontinued before death. Dialysis unit and hospital billing records of patients who discontinued dialysis before death were reviewed to obtain the dates of hospitalization and last dialysis treatment before death. Results: Fifty-six patients (26%) discontinued dialysis therapy before death. In only 8 of those patients' deaths (8 of 212 deaths; 4% of all patient deaths), nephrologists used form 2746 to attribute the death to uremia from stopping dialysis therapy. Time in days from the last dialysis treatment to death in these 8 patients was longer than in the remaining 48 patients who stopped dialysis therapy before death, but in whom cause of death was not coded as uremia (median, 12.5 versus 5 days, respectively; P = 0.01). Patients who stopped dialysis therapy before death were more likely to have malignancy and less likely to have cardiovascular disease coded as cause of death. Most patients died in the hospital; only 2 patients died in hospice. Conclusion: There is physician variability in interpretation of discontinuation of dialysis before death. Thirty percent of patients who discontinued dialysis therapy before death died 3 or fewer days from their last dialysis treatment, making uremia an unlikely cause of death, but suggesting that nephrologists wanted to note that a decision not to continue dialysis therapy had been made before the patient died. Discontinuing dialysis therapy as noted on the death notification form is not a surrogate for withdrawal from dialysis as a cause of death. Providing criteria for reporting discontinuing dialysis therapy would allow us to clarify the incidence of withdrawal from dialysis as a cause of death.