Changes over Time in Patient Stated Values and Treatment Preferences Regarding Aggressive Therapies: Insights from the DECIDE-LVAD Trial

Background Patient-centered care includes matching treatments to patient values and preferences. This assumes clarity and consistency of values and preferences relevant to major medical decisions. We sought to describe stability of patient-reported values regarding aggressiveness of care and preferences for left ventricular assist devices (LVADs) for advanced heart failure. Methods and Results We conducted a secondary analysis of patients undergoing LVAD evaluation at 6 US centers. Surveys at baseline, 1 month, and 6 months included a single 10-point scale on the value of aggressive care (score 1 = “do everything,†10 = “live with whatever time I have left†) and treatment preference (LVAD, unsure, no LVAD). Data were captured for 232 patients, of whom 196 were ultimately deemed medically eligible for LVAD, and 161 were surgically implanted by 1 month. Values at baseline favored aggressive care (mean [SD], 2.49 [2.63]), trending toward less aggressive over time (1 month, 2.63 [2.05]; 6 months, 3.22 [2.70]). Between baseline and 1 month, values scores changed by ≥2 points in 28% (50/176), as did treatment preferences for 18% (29/161) of patients. Values score changes over time were associated with lower illness acceptance, depression, and eventual LVAD ineligibility. Treatment preference change was associated with values score change. Conclusion Most patients considering LVAD were stable in their values and treatment preferences. This stability, as well as the association between unstable treatment preferences and changes to stated values, highlighted the clinical utility of the values scale of aggressiveness. However, a substantial minority reported significant changes over time that may complicate the process of shared decision making. Improved methods to elicit and clarify values, including support to those with depression and low illness acceptance, is critical for patient-centered care. Highlights Self-reported values and preferences change significantly over time in about a quarter of patients actively considering left ventricular assist device implantation. Instability in stated values and preferences challenges clinicians who want to maximally match patient preferences to the treatments they receive. For most patients, clinicians can normalize the desire to maximize survival and empathize with the difficulty of making the decision. For others, clinicians may want to help patients explore the benefits and tradeoffs of therapy, including whether values other than the ones being asked about dominate their consideration.