Speaking Up: How Patient and Physician Voices Shaped a Trial to Improve Goals-of-Care Discussions

Background Patients with advanced cancer benefit from early goals-of-care (GoC) conversations, but few facilitators are known. Objective We describe the process and outcomes of involving patient and physician stakeholders in the design and development of a trial, funded by the Patient-Centered Outcomes Research Institute (PCORI), to enhance oncologists’ communication skills and their propensity to facilitate productive, meaningful GoC discussions with patients with advanced cancer. Methods We recruited oncologists, palliative care physicians, and patient stakeholders to participate in proposal development, intervention design and modification, identification of outcome measures, and refinement of study tools. Formats for exchange included 1:1 structured interviews, workshops, and stakeholder meetings. Results Patient and physician voices helped craft and implement a study of an intervention to enhance oncologists’ ability to facilitate GoC discussions with patients with advanced cancer. Physician inputs guided the creation of an oncologist and palliative care physician “joint visit” intervention at a turning point in disease management. Patient inputs impacted on the language used, outcome measures assessed, and approaches used to introduce patients to the intervention visit. Conclusions Stakeholder input informed the development of a novel intervention that physicians seemed to find both valuable and in sync with their needs and their practice schedules. Where communication about difficult subjects and shared decision making are involved, including multiple stakeholder groups in study design, implementation, and outcomes measurement may have far-reaching effects.