Why is breathlessness invisible?
Our principal investigator Prof Jane Macnaughton writes:
Lung disease kills one person every five minutes. Unbelievably, this statistic has not changed in the last decade, while deaths from heart disease fell by 15%. Most lung diseases are not only life-threatening, but they also have a very serious effect on quality of life. If you or someone you know suffers from breathlessness, you will know that walking, shopping, looking after the house or family, even talking, can be very difficult.
The British Lung Foundation’s recent Battle for Breath report is a call to action, which aims to bring lung disease onto the same footing as cancer and heart 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 this 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 we are interested in how people become aware that they have a problem that needs medical help. This is particularly problematic in the case of lung disease because occasional breathlessness 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 are getting older, smoke or are not exercising enough. Very often people with lung disease do not report their symptoms to their doctor and sometimes obvious signs are not picked up by GPs. I worked for many years as a GP in a very 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. This is a step in the right direction because it forces clinicians to think about the symptom itself rather 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 may 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 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. 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.
 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.
This is the first of a series of responses to the British Lung Foundation‘s Battle for Breath report. Join us on Twitter to discuss the issues, Thursday 24 November 2016, 12:00-13:00 GMT #breathreport or post your questions below.
Jane leads Life of Breath at Durham University. She is Professor of Medical Humanities and has published in medical education, medical humanities, literature and medicine and history of medicine. She also teaches medical students and her current clinical work is in gynaecology.