Optimal participation in decision-making in advanced chronic disease: perspectives of patients, relatives and physicians.

Abstract

Making decisions about health care issues in advanced illness is difficult and the participation of patients and relatives is essential. Most of the studies on shared decision-making focus on the interaction between patient and physician (dyadic interaction), while the role of relatives in triadic decision-making remains less explored. The aim of the study was to investigate the perceived importance of the role of the patient, the physician and the relative in the decision-making from their respective perspectives. Patients (n=154) with advanced disease, their relatives (n=95) and physicians (n=108) were asked to rank the importance of their roles on the scale from 0 to 10. Differences between respondent groups were examined by ANOVA. A typology of answers was constructed for dyadic and triadic relations and analyzed by descriptive statistics and the chi-square test. Physicians rated the importance of patients' role in decision-making significantly higher [mean 9.31; 95% confidence interval (CI): 9.07-9.55] than did patients themselves (mean 7.85; 95% CI: 7.37-8.32), while patients and relatives rated higher the importance of the physicians' role (mean 9.29; 95% CI: 8.98-9.59 and mean 9.20; 95% CI: 8.96-9.45, respectively) than did physicians themselves (mean 8.35; 95% CI: 0.06-8.65). In the analysis of the patient-physician dyadic interaction, patients ranked their role as equally important (44.1%) or more important (11.2%) than the role of physicians. Physicians (56.5%) thought patients should play a more important role. When relatives were included in the analysis, patients either preferred equal role of the three actors (30.2%) or prioritized the role of the physician and the relatives (16.8%), while physicians and relatives prioritized the role of the patient (54.6% and 29.0%, respectively). All results were statistically significant (P<0.05). Physicians and relatives tend to accentuate the active role of patients, while patients mostly prefer shared decision-making. Physicians seem to underestimate the importance of the role of relatives, compared to patients and relatives for whom the participation of relatives in the decision-making is of greater importance. A triadic decision-making model that acknowledges the importance of all three actors should be implemented in decision-making process in advanced illness.