Abstract
PurposePatients are increasingly involved in decision making by their clinicians. Yet, there are concerns that involvement in decision making may cause emotional distress in patients. Little research has examined the nature of the burden experienced by patients confronted with a life-changing treatment decision. Therefore, we explored the nature and manifestations of burden experienced by patients with early-stage breast and prostate cancer regarding their involvement in decision making. We further aimed to identify patient-perceived causes and potential solutions for their experienced burden.MethodsWe used semi-structured interviews to explore the perspectives of patients with early-stage breast and prostate cancer. Patients (N = 24) were eligible if they were diagnosed in the past 6 mo and reported some degree of burden regarding their involvement in decision making. Two researchers independently inductively coded the interviews using thematic analysis.ResultsPatients described being burdened by the decision in various ways and at various moments in the decision-making process. Patients attributed their decision-related burden mainly to uncertainty, fear of making the wrong decision, insufficient guidance by their clinician, and feeling an overwhelming sense of responsibility for their treatment decision. Patients indicated various factors that mitigated their burden or facilitated decision making, including having sufficient time, the opportunity to discuss the choice with experts and/or family, and receiving advice or confirmation from family or the clinician.ConclusionThese findings suggest that decision-related burden could be caused by the uncertainty and anxiety patients experience and by a nonpreferred division of roles within the decision-making process.ImplicationsAccordingly, acknowledging patients' feelings by discussing the presence of uncertainty and distress might normalize the burden for patients. Moreover, clinicians could explore and adjust to patients' role preference in decision making and discuss what would facilitate the decision process for patients.HighlightsPatients experience emotional, cognitive, and physical burden from their involvement in decision making.Some of the burden appears to result from the way clinicians involve patients in decision making.In addition to information about options, benefits, and harms, patients require active support in their decision-making process.Clinicians could aim to avoid overfocus on patient autonomy and instead establish authentic, shared decisions, with a role for some clinician control if needed.