The association between treatment preferences and trajectories of care at the end-of-life

BACKGROUND: Honoring patients' treatment preferences is a key component of high-quality end-of-life care. OBJECTIVE: To determine the association of preferences with end-of-life care. DESIGN: Observational cohort study. PARTICIPANTS: 118 community-dwelling persons age >= 65 years with advanced disease who died in a study which prospectively assessed treatment preferences. MEASUREMENTS: End-of-life care was categorized according to four pathways: (1) relief of symptoms only, (2) limited attempt to reverse acute process with rapid change to symptomatic relief, (3) more intensive attempt to reverse acute process with eventual change to symptomatic relief, and (4) highly intensive attempt to reverse acute process with no change in goal. RESULTS: Adjusting for diagnosis, those with greater willingness to undergo intensive treatment (defined as a desire for invasive therapies despite >= 50% chance of death) were significantly more likely to receive care with an initial goal of life prolongation (pathways 2-4) [odds ratio 4.73 (95% confidence interval 1.39-16.08)] than those with lower willingness. Nonetheless, mismatches between preferences and pathways were frequent. Only 1 of 27 participants (4%) with lower willingness to undergo intensive treatment received highly intensive intervention (pathway 4); 53 of 91 participants (58%) with greater willingness to undergo intensive treatment received symptom control only (pathway 1). CONCLUSIONS: The association between preferences and trajectories of end-of-life care suggests that preferences are used to guide treatment decision-making. In contrast to concerns that patients are receiving unwanted aggressive care, mismatches between preferences and trajectories were more frequently in the direction of patients receiving less aggressive care than they are willing to undergo.