The objective of this study was to explore and contrast the experience and meaning of breathlessness in patients with chronic obstructive pulmonary disease (COPD) or lung cancer at the end of life.

We conducted a qualitative study embedded in a longitudinal study using topic-guided in-depth interviews with a purposive sample of patients suffering from breathlessness affecting their daily activities due to advanced (primary or secondary) lung cancer or COPD stage III/IV. All interviews were audiotaped, transcribed verbatim, and analyzed using framework analysis.

Ten COPD and eight lung cancer patients were interviewed. Both groups reported similarities in their experience. These included exertion through breathlessness throughout the illness course, losses in their daily activities, and the experience of breathlessness leading to crises. The main difference was the way in which patients adapted to their particular illness experience and the resulting crises over time. While COPD patients more likely sought to get their life with breathlessness under control, speaking of daily living with breathlessness under certain conditions, the participating lung cancer patients often faced the possibility of death and expressed a need for security.

Breathlessness leads to crises in patients with advanced disease. Although experiences of patients are similar, reactions and coping mechanisms vary and are more related to the disease and the stage of disease.