Life of Breath post-doctoral researcher Rebecca Oxley writes:
‘Breath Lab’ is designed as a living experiment to promote discussion around a central theme relating to breath, breathing and breathlessness. The aim is not to discuss key research findings, but rather to encourage an open forum where different perspectives and points of view are valued. The theme of the inaugural Breath Lab was ‘Lost in Translation’, exploring the language of breathlessness, lung disease and respiratory healthcare. In the oak-panelled setting of The Mining Institute in Newcastle, the lab brought together a range of people including respiratory physiotherapists, respiratory nurse specialists, those with lived experience of a lung condition, academics and a British Lung Foundation collaborator around the following questions:
- Is our language rich enough to fully describe the experience of breathlessness?
- Do some of the words and descriptions used have unhelpful connotations?
- Is there a mismatch between the language doctors and patients use?
Each question was introduced by a short verbal story, a personal musing by invited speakers on how they engaged with the question. The room had a ‘buzz’ in the air, and an atmosphere of relaxed consideration, even if small tensions were evident in how questions were approached by those from different experiential backgrounds. These discreet but observable communicative strains – patterned through short pauses, slight disjunctions in conversation, and a leaning forward or backwards – served to highlight the need for and value of an inclusive dialogue to work through queries on language and translation.
Looking through the notes taken, similar and overlapping thoughts were being raised across the groups, although at varying times and with different emphases. One notion that emerged, primarily around the first question (is our language rich enough to fully describe the experience of breathlessness?), was that breathlessness is experienced both individually and collectively in the sense that it is subjectively lived through but informed by a number of factors such as socio-economic status, ethnicity, culture and education. It was pointed out that if language is approached as a resource for understanding breathlessness, how is it possible for any one language (or one way of describing breathlessness) to be rich enough to fully describe the experience of breathlessness or its sensation? One participant noted that they had experienced huge differences in phrases used to express breathlessness among patients in Canada and in the UK, and another contemplated whether ‘richness’ implied a wide vocabulary that may not be available to those in the UK where English is their second language, or with lower levels of education. Queries included whether the point is not be to be able to describe feelings or experiences of breathlessness, but to pick up on its impact. To call attention to how breathlessness is systemic, experienced throughout the body (e.g. fatigue, cognitive issues) and in wider day-to-day life. Better ways of describing and understanding breathlessness might then imply flexibility, and being familiar with how individuals live through and express breathlessness and what this means for them – including in the clinical encounter. One respiratory nurse specialist shared how she often refers back to the phrases patients use to describe their feelings of breathlessness (even with expletives!) to assist in their therapy for anxiety. Another participant reflected that often breathlessness is made sense of in relation to something else, and certainly in discussing this question many were describing breathlessness through analogy and metaphor – and particularly through comparison with the ‘air’. Breathlessness can feel like “there’s not enough air in the air”, and can be experienced in terms of air clarity, temperature, and degree of calm.
The second question, on whether certain words or descriptions have unhelpful connotations, gleaned a wide range of examples. One participant living with a lung condition was told that her airways were not ‘bouncy’ anymore, signalling the notion that lungs were compared to sponges and should be ‘springy’. This made her feel “Oh, I’m not bouncy”. The same participant noted that the term “fixed obstruction” held a sense of finality or that there “was no going back”, a certainty that the diagnosis was chronic. Indeed, some interpret the word ‘chronic’ as meaning that “there’s nothing to be done”, which is not necessarily true considering, for example, the benefits of pulmonary rehabilitation in improving quality of life. Yet the word ‘pulmonary’, which implies a ‘disease of the lungs’ can also be unhelpful as it implies that the focus is only on the lungs, when the experience, interventions and approaches could be more holistic. It also picks up on the striking description of ‘lungs as Cinderella’, where lungs are often unnoticed, on the inside, and only when pathology is present do you talk about them.
The limits of the term ‘pulmonary’ in the context of pulmonary rehabilitation (PR) were also discussed. Some participants, when first hearing of the PR programme, did not understand what was involved from its name. Others suggested that using the term pulmonary implies that the programme would emphasise lung or breathing exercises, when in fact it is a full-body approach to fitness so as to improve both breathlessness and well-being. However, using an alternative which mentions exercise or fitness can deter certain patients. Rehabilitation can also raise stigmatised notions of alcohol or drug rehabilitation, which for some may be unwelcome – but for others can be a source of good humour. One health professional noted that enthusiasm and time spent explaining the personal benefits of pulmonary rehabilitation can lead to greater attendance.
Question three, on the mismatch between the language patients and doctors use, illuminated how language can be used to both include and exclude. It was raised that the context of the clinical consultation can lead to doctors ‘very professionally not listening’. Others highlighted that the paternalistic style of medicine often leads to communication breakdown, and one key instance of this comes in the form of the clinical letter. Clinical letters are mainly written doctor to doctor, yet the patient is copied in on them. However, as one participant raised, patients often cannot understand what has been written. Indeed, one contributor noted that a recent letter contained terms he couldn’t even find on the internet! Another participant remembered a patient who had been very upset to read that her lungs looked like “ground glass”. She wondered how glass had got into her lungs, and was worried about her lungs turning to glass. However, other clinicians in the lab expressed how they, or doctors they knew, purposely explained terms or used lay language to assist patients. Yet the issue remains of how to translate medical language into information that is easy to understand without dumbing down or scaring the patient. This conversation also acknowledged the pressure on clinicians to always be seen as ‘right’ or “a bastion of calm, authority and knowledge”. Further explorations of the language of breathlessness, as well as honesty and openness about current problems and issues were deemed to be urgently required for both patient and doctor to improve the experience and management of breathlessness.
To the sound of the singing bowl, which punctuated discussion around the three questions, talking came to a calm stop. Initial feedback from the Lab was the appreciation of the time given to think through these issues, listening to other points of view, and being part of a forum that valued different voices and opinions. As a team member of the Life of Breath project, the forum both supported current research and offered sparks of ideas that will inform developing research.