Examining patients' preferences for participation in clinical decision-making: the experience in a Latin American chronic obstructive pulmonary disease and cancer outpatient population

Abstract

BACKGROUND AND AIMS: It is generally accepted that patients prefer to be told the truth by their physicians; however, the practice of partial truth-telling is frequent with an existing 'norm of nondisclosure.' Our primary objective was to determine what patients wanted to be told about their illness, and whether there might be differences between patients with either cancer or advanced chronic obstructive pulmonary disease (COPD). A second objective was to determine how these patients envisioned their participation, or lack thereof, in the treatment decision-making process. METHODS: Subjects were eligible for this prospective study if they were attending the oncology or pulmonary outpatient consultation services at the British Hospital or the Sanatorio Güemes Private Hospital in Buenos Aires, Argentina between June 2009 and May 2010. RESULTS: Ninety-nine patients were recruited. Forty-four had a diagnosis of COPD, and 55 patients had cancer. Seventeen of the patients expected their health to improve in the future, but a significantly higher proportion of patients with malignant disorders expected to get better in the near future as compared with those with COPD (98.2% vs 62.8%, P < 0.001). Most study participants expressed a desire to receive all the information available about their condition. A majority of the participants expressed a preference for making treatment decisions in collaboration with their physician (40.4%) CONCLUSIONS: While they considered the role of their families relevant and wanted information to be shared so that family members might participate in decision-making, they did not want their families to have a right to withhold information, make final decisions.