A role for the sick role. Patient preferences regarding information and participation in clinical decision-making

To assess whether patient preferences regarding information and participation in decision-making about treatment options are related to patient characteristics and the context of the decision. Other studies have compared decision-making preferences in patients with cancer and healthy subjects, or in different contexts among patients in the same group. This study combined these designs.

Questionnaire completed by the subjects.

Outpatient clinic of a university hospital.

A consecutive sample of 55 patients with cancer treated at a radiotherapy clinic, 53 persons accompanying them, a consecutive sample of 53 patients visiting a surgical outpatient clinic for a nonmalignant condition and 36 persons accompanying them.

Preferences regarding information and participation in decision-making in general and with respect to 4 vignettes that described different diseases of varying seriousness, varying treatment options and side effects.

Older patients and men were more likely to let the physician make decisions regarding their treatment. Patients, as compared with nonpatients (their companions), were more likely to prefer a passive role regarding treatment decisions. No differences were seen between patients with cancer and patients with nonmalignant conditions. Also, no effect was observed in relation to the decision-making situations described in the vignettes. Of the patients who preferred more information, a substantial proportion still preferred a passive decision-making role.

The lack of strong predictors of a preferred decision-making role implies that clinicians need to assess every patient individually to determine what role he or she prefers. The finding that the patients preferred a more passive role than their companions suggests that the "sick role" influences the preference regarding participation more strongly than the type of decision to be made or the presence of a life-threatening disease. This hypothesized shift in preference among subjects who are sick implies that these patients need encouragement to participate.