Recognition of chronic breathlessness as a distinct clinical entity will help overcome the therapeutic nihilism that pervades the management of patients with respiratory, cardiac and neurodegenerative diseases.
With that goal in mind, an international group of experts has reached consensus on a definition for chronic breathlessness syndrome: ‘breathlessness that persists despite optimal treatment of the underlying pathophysiology and that results in disability’.
The limbic spoke to a member of the group, palliative medicine specialist Professor David Currow, from the University of Technology Sydney’s Centre for Cardiovascular and Chronic Care.
Usual practice regarding chronic breathlessness typically stops at the point of optimised treatment for the underlying disease. How will the definition of a syndrome encourage better management of these patients?
Naming this syndrome is about fundamental change in the way we teach health professionals and model care. Giving it a name means we can focus on symptom control in addition to continuing to refine treatment of the underlying disease. There is a good evidence base for both non-pharmacological and pharmacological treatment of chronic breathlessness.
Who needs to know about this initiative and what would you like clinicians to do?
We need to ensure all health professionals can name this and understand the importance of the change. Chronic breathlessness needs to be a part of their taxonomy. We need to be changing our training for all disciplines, modelling care for junior clinical staff and naming it in our meetings. We also need to talk to patients and their caregivers at a broad community level and not just in one-to-one clinical encounters.
Defining chronic breathlessness will hopefully improve its visibility. How do you see that translating into patient outcomes?
Patients have given up so many things in order to avoid breathlessness – they can’t walk the dog or shop for their groceries. In the basic assessment of patients, ask them, ‘What have you given up to manage your breathlessness?’ A focus on managing their breathlessness can change the threshold at which breathlessness leads to a nasty negative spiral of deconditioning. Patients can have more control over their lives and the opportunity to do those things again.