A Prospective Cohort Study of Medical Decision-Making Roles and Their Associations with Patient Characteristics and Patient-Reported Outcomes among Patients with Heart Failure.

Objective: Among patients with heart failure (HF), we examined 1) the evolution of patient involvement in decision making over 2 y, 2) the association of patient characteristics with decision-making roles, and 3) the association of decision-making roles with distress, spiritual well-being, and quality of physician communication.

Methods: We administered the survey every 4 mo over 24 mo to patients with New York Heart Association class 3/4 symptoms recruited from inpatient clinics. The decision-making roles were categorized as no patient involvement, physician/family-led, joint (with family and/or physicians), patient-led, or patient-alone decision making. The associations between patient characteristics and decision-making roles were assessed using a mixed-effects ordered logistic regression, whereas those between patient outcomes and decision-making roles were investigated using mixed-effects linear regressions.

Results: Of the 557 patients invited, 251 participated in the study. The most common roles in decision making at baseline assessment were "no involvement" (27.53%) and "patient-alone decision making" (25.10%). The proportions of different decision-making roles did not change over 2 y (P = 0.37). Older age (odds ratio [OR] = 0.97; P = 0.003) and being married (OR = 0.63; P = 0.035) were associated with lower involvement in decision making. Chinese ethnicity (OR = 1.91; P = 0.003), higher education (OR = 1.87; P = 0.003), awareness of terminal condition (OR = 2.00; P < 0.001), and adequate self-care confidence (OR = 1.74; P < 0.001) were associated with greater involvement. Compared with no patient involvement, joint (β = -0.58; P = 0.026) and patient-led (β = -0.59; P = 0.014) decision making were associated with lower distress, while family/physician-led (β = 4.37; P = 0.001), joint (β = 3.86; P < 0.001), patient-led (β = 3.46; P < 0.001), and patient-alone (β = 3.99; P < 0.001) decision making were associated with better spiritual well-being.

Conclusion: A substantial proportion of patients was not involved in decision making. Patients should be encouraged to participate in decision making since it is associated with lower distress and better spiritual well-being.

Highlights: The level of involvement in medical decision making did not change over time among patients with heart failure. A substantial proportion of patients were not involved in decision making throughout the 24-mo study period.Patients' involvement in decision making varied by age, ethnicity, education level, marital status, awareness of the terminal condition, and confidence in self-care.Compared with no patient involvement in decision making, joint and patient-led decision making were associated with lower distress, and any level of patient involvement in decision making was associated with better spiritual well-being.