Background: Approximately 10% of the deaths of patients receiving long-term dialysis for end-stage renal disease are preceded by discontinuation of dialysis. We prospectively studied the decision to discontinue dialysis and whether, as is often stated, these patients have a prompt, predictable, and comfortable death.
Methods: All patients receiving hemodialysis in a hospital-based and a freestanding unit whose long-term dialysis was discontinued in 1990 were included in the study. Patients, providers, and families of prospectively enrolled cases were interviewed to determine the reasons for discontinuation; the patients' terminal courses were reviewed daily to collect information describing their quality of death. Retrospectively enrolled cases were studied by chart review and interviews of providers. The reasons for discontinuation of dialysis and a rating of the quality of their deaths (for prospectively studied patients only) were determined by interdisciplinary team consensus. Quality of death was rated on scales of 1 (worst) to 5 (best) according to duration of dying, discomfort, and psychosocial circumstances.
Results: Eighteen patients discontinued dialysis after a mean duration of 43.6 months of hemodialysis, and they lived a mean of 9.6 days after termination. The quality of death of the 11 patients who were enrolled prospectively was subjectively assessed as "good" (> 10 of a possible 15 points) for seven patients and "poor" for four patients. A good quality of death was more likely if dialysis was discontinued because of medical deterioration from progressive chronic disease (P = .009); none of the three patients whose dialysis was discontinued for other reasons had a good death (P = .024).
Conclusions: A majority of the prospective cohort of patients who discontinued dialysis experienced a good death by our largely subjective criteria. Improved palliative therapy for some of these dying patients, however, could have ameliorated prolonged suffering, delirium, and inadequately treated pain that led to a poor quality of death.