Chronic breathlessness: re-thinking the symptom.

To the Editor:

We wholly applaud the move by Johnson et al. [1] to improve awareness of breathlessness and to raise its profile as a subject for focussed clinical research. We consider their research and the ensuing proposal to recognise breathlessness via a new medical term, “chronic breathlessness syndrome”, as important and justified. We share their goal, which is to direct attention to this neglected, undertreated and under-researched symptom.

There are two important caveats to be made in response to this article, however. First, there is a need to involve those who live with chronic breathlessness and are thus “experts by experience” in discussions about the framework proposed here, rather than bringing them into the conversation once consensus has been achieved. Second, further medicalisation of breathlessness via the term “syndrome” may not be the best way forward. Research into patients' experience of breathlessness shows that the ways in which breathlessness is spoken about (medicalised and otherwise) not only reflect their experiences but also helps to shape how breathlessness is lived [2-6].

O.K. Faull and colleagues, in their response to Johnson et al. [1], comment on the individuality of responses to breathlessness that rely on prior experiences and bodily awareness (interoception). Context and culture play an important role in shaping the understanding and perception of breathlessness [2–4, 6]. For example, among African American communities across the USA, the last words of Eric Garner, “I can't breathe”, as he suffocated in a tussle with police officers, have become a slogan for the Black Lives Matter movement and a metaphor for the lives of those living under other kinds of oppression [2]. Başoğlu [7] suggests that asphyxiation is the most traumatic form of torture and that persistent breathlessness because of an underlying medical condition may be even worse due to the duration of the suffering involved.

Sufferers of respiratory illness vary in relation to the intensity, affect, ideation and meaning they attribute to their breathlessness [3-6]. It affects every aspect of the life of a breathless person in ways that description of it as a medical symptom cannot capture in full [8]. There is a need to legitimise a range of attitudes towards breathlessness in order for them to inform the clinical encounter. Collecting such experiences under the umbrella term “syndrome” may not be sufficient to enable full expression of the variability and multiple meanings of the experience of breathlessness, and may carry unexpected cognitive and affective “baggage” that detracts from its utility as a proxy for experience.

In view of the highly contextualised experience of breathlessness, it is critical to think about whose views are part of the debate. Discussions with experts by experience and first-person reports of experiences of breathlessness [3, 5] have revealed how powerful language and context are in determining how people with breathlessness think about and experience their problem [4, 6], and how this influences what they might do. Words such as “pulmonary” and “rehabilitation”, for example, may negatively impact upon the uptake of one of the most effective interventions for breathlessness [6].

There is a further stage necessary in the research process of Johnson et al. [1] in order to validate the claim made in the paper that “a recognised syndrome would […] give permission for patients to discuss their ongoing breathlessness with their clinicians”. As Johnson et al. [1] suggest, patients and their families need to be involved in the discussion, but they should be able to critique the framework suggested by the paper, rather than be presented with it as a fait accompli. Otherwise there is a danger that the words “chronic” and “syndrome” will drive people with breathlessness further underground, in part because they have not been involved in the process of describing their own condition [9]. We encourage Johnson et al. [1] to take this research on to its next logical stage, that of developing a truly consensual terminology that considers the critical role language, metaphor and meaning play in both living with and treating breathlessness. This could be done using the Delphi technique within a more participatory paradigm [10]. Such an approach offers the chance of empowering patients and caregivers in ways that would result in real changes to both their experience and treatment.

H. Carel ERJ-02331-2017_Carel

J.W. Dodd ERJ-02331-2017_Dodd

J. Macnaughton ERJ-02331-2017_MacNaughton

R. Oxley ERJ-02331-2017_Oxley

A. Rose ERJ-02331-2017_Rose

A. Russell ERJ-02331-2017_Russell