Veterans' Perspectives on Serious Illness Communication About Lung Disease Progression.

Abstract

Introduction: Serious illness communication (SIC) is a series of complex, iterative conversations between patients, their caregivers, and clinicians in which a patient's understanding of their illness, preferences, values, and medical decisions are addressed. An essential part of SIC for patients with chronic lung disease is communication about lung disease progression. How patients interpret clinician communication about lung disease progression is unknown. This study sought to understand how patients experience communication about the future of lung disease and how this influences a patient's understanding of their disease.

Materials and methods: Semi-structured interviews. Transcripts were analyzed using content analysis. Participants were veterans and had chronic obstructive pulmonary disease (COPD), interstitial lung disease (ILD), and/or pulmonary hypertension.

Results: Twenty-two patients were approached and completed interviews. Participants were a mean age of 71 years; female, 9%; white, 64%; and non-Hispanic, 86%. Four themes emerged. (1) Gaps in understanding of lung disease: Participants did not know about future exacerbations of lung disease. (2) Burden: Participants did not want to burden family members, which motivated a desire for information about how to manage their lung disease and plan for future care needs. (3) Mistrust: Participants were mistrustful about a potential link between military exposures and lung disease. (4) Information needs: Participants wanted information about daily life, causes of lung disease, test results, and time remaining.

Conclusions: There are information needs among veterans with chronic lung disease regarding exposures, causes of lung disease, and managing lung disease. Future work should explore how to address veterans' unmet SIC needs.