Objectives: To describe how frequently seriously ill persons perceive that the care they receive is inconsistent with treatment preferences and the effect on 1-year resource utilization.
Setting: Five U.S. teaching hospitals.
Design: Secondary analysis of interview data.
Participants: Seriously ill Medicare beneficiaries.
Measurements: Interviews about patients' preferred approaches to care and whether they perceived care was consistent with these preferences. Part A and B costs for up to 1 year, adjusted for cost differences across hospitals and over time and for 1-year survival.
Results: Forty percent of the 1,185 study patients expressed a preference for treatment to focus on extending life, whereas 60% expressed a preference for comfort care. Eighty-six percent of the patients who wanted aggressive treatment reported that care was consistent with their preferences, but only 41% of those who preferred comfort care reported that care was consistent with their preferences. More than one-third of those with a preference for comfort care (35%) reported that the medical care that they received was inconsistent with their goals; 24% were unsure of treatment goals. Those who preferred comfort care but believed that their care was inconsistent with their wishes had higher estimated mean 1-year costs than those who believed that their care was consistent with their wishes (92,442 US dollars vs 52,098 US dollars, P < .001). Even after adjusting for differences in disease severity, age, gender, race, functional status, income, and years of education, adjusted costs were 1.4 times (95% confidence interval = 1.2-1.6) higher. However, 1-year survival was lower in these patients who stated that care was consistent with their preference to focus on comfort care than for those who wished to receive comfort care and stated that care was not consistent with their preference (38% vs 55% 1-year survival, P < .001).
Conclusion: More than one in three seriously ill persons who prefer comfort care believe that their medical care is at odds with their preference that treatment focus on palliation. Such discord was associated with higher 1-year healthcare costs and increased survival.