Patient and caregiver questions and clinician responses during initial outpatient neuropalliative care appointments

OBJECTIVE: Open communication during appointments exemplifies person-centered care. The current study characterized questions asked by persons with neurologic illnesses and their caregivers—and clinicians' responses to those questions—during initial outpatient palliative care appointments. METHODS: We coded type (direct or indirect) and topic of questions stated by patients and their caregivers in audio recordings from 38 initial outpatient palliative care appointments. We also coded the completeness and quality features of clinicians' responses. RESULTS: Patients and caregivers stated 556 total questions; most were direct questions (79.7%) and primarily about symptoms, treatment, and lifestyle issues. Clinicians responded to more than 90% of all questions. Responses to both question types were similar in completeness and quality, but clinicians more frequently offered support in response to direct questions and gave recommendations in response to indirect questions. CONCLUSION: Persons with neurologic illnesses and their caregivers use different question types to obtain information about symptoms and treatment during initial palliative care appointments. Results may guide clinician training and patient education for optimizing information exchange in palliative care. INNOVATION: This study is the first to explore patient and caregiver use of indirect questions in neuropalliative care appointments and the quality of clinicians' responses to those questions.