Why is breathlessness invisible?
(9 May 2017)
I live in a university town amongst a largely middle class population. When I tell people that I am working on a Wellcome Trust-funded research project on breathlessness with a focus on COPD, I am greeted with blank looks. ‘What’s that?’, friends and colleagues ask, so I try to explain. However, if you are someone who lives in one of ‘hot spots’ for COPD identified by the British Lung Foundation as Glasgow, Lanarkshire, Liverpool and Hull, you may know all about it[i].
The British Lung Foundation’s important investigation into the impact of lung disease in the UK, The Battle for Breath[ii], points to some of the reasons why this division exists. Most common lung diseases - COPD, asthma and lung cancer – are strongly associated with social deprivation. Smoking is an important causative factor but it is not the only one. People living in the most deprived communities are, for example, more likely to have been exposed to workplace dusts and air pollution. The BLF report contains some frightening statistics such as the fact that lung disease kills one person every five minutes. Unbelievably, this statistic has not changed in the last decade while deaths from heart disease decreased by 15%. Most of the diseases listed in the BLF report are life threatening, but they also have very serious effects upon quality of life. If you or someone you live with suffers from breathlessness, you will know that walking, going for shopping, looking after the house or family, even talking or leaving the house can be very difficult.
The Battle for Breath report sets out six crucial steps towards bringing lung disease onto the same footing with cancer and lung disease in terms of UK health priorities. The mismatch in research funding is staggering. Around 7 million people in the UK have cardiovascular disease and 2.5 million have cancer. A massive 12 million have lung disease, but funding for research is about a tenth of that allocated to cardiovascular disease.
From my perspective as a researcher leading work on the Life of Breath project at Durham University, reasons for this neglect can be found in a range of contexts and all of these need to be addressed to solve the invisibility of breathlessness. In our work in Life of Breath we are interested in how it is that people become aware that they have a problem that needs medical help. This is particularly problematic in the case of lung disease because breathlessness (a key sign of lung disease) is part of normal experience. Lung disease often has a gradual onset and people attribute a slow increase in breathlessness to the fact that they smoke, are getting older or are not exercising enough[iii]. Very often people with lung disease do not report their symptoms to their doctor and sometimes obvious symptoms are not picked up by GPs. I worked for many years as a GP in a socially deprived area of Glasgow (one of the COPD ‘hot spots’) and it just seemed normal for all my older patients to be breathless or to have chronic cough. In order to make a change it is important for GPs to be aware, but it is also important to understand how people distinguish ‘normal’ from ‘pathological’ breathlessness. In our project we have been considering ways people might do that which would not involve clinical measurement. We’ve been thinking about rhythm, pacing, reading poetry and prose. Might we be able to construct lay measures to help people self assess changes in their breathing capacity?
Once people come through the clinic door and a diagnosis of lung disease is made, there are still more problems. Breathlessness associated with lung disease very often becomes chronic and even after maximum treatment has been offered, people are still left with significant problems. Recently, ‘chronic refractory breathlessness’ has been identified by colleagues working at Hull York Medical School as a distinct clinical syndrome[iv]. This is a step in the right direction because it forces clinicians to think about the symptom itselfrather than the underlying cause. Doctors are trained to treat the disease not the symptom, but in chronic lung disease, breathlessness just keeps getting worse. Eventually, doctors are unable to offer anything more, and patients will stop complaining and put up with it, meaning they become even more invisible.
This is where new research approaches come in to offer some hope for change. Clinicians and scientists working on the mechanics of breathlessness have begun to realise something that has always been apparent to people with lung disease: that thoughts and feelings influence their breath. Scientists working at Boston Medical School are working on a ‘multidimensional model’ that attempts to make sense of how thoughts and feelings interact with the lungs and the muscles of respiration to produce the sensation of breathlessness[v]. These scientists are using functional MRI scanning to find out which bits of the brain ‘light up’ when someone is breathless. Our Life of Breath project is connecting with similar work by Dr Kyle Pattinson at Oxford University to bring the neuroscience together with our research on the ideas, thoughts and emotions people with breathlessness experience.
Breathlessness is hidden for many complex reasons but it is important to bring it into the open to relieve suffering and overcome stigma. Researchers are starting to uncover the hidden secrets of breathlessness in the brain and there is great hope that this work will lead to new treatments for this very distressing symptom and its associated lung diseases.
[i] British Lung Foundation, Invisible Lives: Chronic Obstructive Pulmonary Disease (COPD) – finding the missing millions. BLF, London, 2007.
[ii] British Lung Foundation, The Battle for Breath – the impact of lung disease in the UK. BLF, London, 2016. https://www.blf.org.uk/what-we-do/our-research/the-battle-for-breath-2016 [Accessed 28th September 2016].
[iii] Gysels M., Higginson I. J. Access to services for patients with chronic obstructive pulmonary disease: the invisibility of breathlessness. Journal of Pain and Symptom Management 2008, 36 (5): 451-60.
[iv] Johnson M., Currow D. C. Chronic refractory breathlessness is a distinct clinical syndrome. Current Opinion in Supportive Palliative Care 2015, 9: 203-205.
[v] Lansing R. W., Gracely R. H., Banett R. B. The multiple dimensions of dyspnea: review and hypotheses. Respiratory Physiology and Neurobiology 2009, 167 (1): 53-60.