“So, I try not to go…” Acute-on-chronic breathlessness and presentation to the emergency department: In-depth Interviews With Patients, Carers, and Clinicians

Context: People with acute-on-chronic breathlessness due to cardiorespiratory conditions frequently present to the emergency department (ED) causing burden for the person concerned, their care takers, and emergency services. Objective: To understand the reasons for ED presentation for acute-on-chronic breathlessness and how optimal care might avoid presentations. Methods: Qualitative in-depth linked interviews were conducted as part of a mixed-methods study. Transcripts of audio-recordings were subjected to thematic analysis. Consenting patients presenting to a single tertiary hospital ED with acute-on-chronic breathlessness able to be interviewed were eligible. Patient-participants (n = 18) were purposively sampled for maximum variation. Patient-participant–nominated carers (n = 9) and clinicians (n = 8) were recruited. Results: Theme 1: “The context for the decision to present to the ED” is the experience of acute-on-chronic breathlessness, in which a person faces an existential crisis not knowing where the next breath is coming from, and previous help-seeking experiences. Theme 2 (“Reasons for presentation”): Some were reluctant to seek help until crisis when family carers were often involved in the decision to present. Others had previous poor experiences of help-seeking for breathlessness in the community and turned to the ED by default. Some had supportive primary clinicians and presented to the ED either on their clinician's recommendation or because their clinician was unavailable. Conclusions: The decision to present to the ED is made in the context of serious crisis and previous experiences. Discussion of the reason for presentation may enable better management of chronic breathlessness and reduce the need for future emergency presentation.