‘Scared to death’ dyspnoea from the hospitalised patient’s perspective

Because dyspnoea is seldom experienced by healthy people, it can be hard for clinicians and researchers to comprehend the patient’s experience. We collected patients’ descriptions of dyspnoea in their own words during a parent study in which 156 hospitalised patients completed a quantitative multidimensional dyspnoea questionnaire. These volunteered comments describe the severity and wide range of experiences associated with dyspnoea and its impacts on a patients’ life. They provide insights not conveyed by structured rating scales. We organised these comments into the most prominent themes, which included sensory experiences, emotional responses, self-blame and precipitating events. Patients often mentioned air hunger (‘Not being able to get air is the worst thing that could ever happen to you.’), anxiety, and fear (‘Scared. I thought the world was going to end, like in a box.’). Their value in patient care is suggested by one subject’s comment: ‘They should have doctors experience these symptoms, especially dyspnoea, so they understand what patients are going through.’ Patients’ own words can help to bridge this gap of understanding.