Background: Patients with advanced chronic disease are frequently offered medical and surgical interventions with potentially large trade-offs between benefits and burdens. Little is known about the frequency or outcomes of treatment refusal among these patients.
Objective: To assess the frequency of, reasons for, factors associated with, and outcomes of treatment refusal among older persons with advanced chronic disease.
Design: Observational cohort study.
Participants: Two hundred twenty-six community-dwelling persons with advanced cancer, chronic obstructive pulmonary disease, or congestive heart failure, interviewed at least every 4 months for up to 2 years.
Measurements: Participants were asked if they had refused any treatments recommended by their physicians, and why.
Results: Thirty-six of 226 patients (16%) reported refusing 1 or more medical or surgical treatments recommended by their physician. The most frequently refused interventions were cardiac catheterization and surgery. The most common reason for refusal was fear of side effects (41%). Treatment refusal was more frequent among patients who wanted prognostic information (10% vs 2%, p = .02) or estimated their own longevity at 2 years or less (18% vs 5%, p = .02). There was an increased risk of mortality among refusers compared with non-refusers (HR 1.98, 95% CI 1.02-3.86).
Conclusions: Refusal of medical and surgical interventions other than medications is common among persons with advanced chronic disease, and is associated with a greater desire for, and understanding of, prognostic information.