Invisible suffering: breathlessness in and beyond the clinic

Abstract

The German poet Rainer Maria Rilke wrote of breath as “an invisible poem”. Indeed, breath is invisible literally but also metaphorically; it is something we take for granted. Breath is intimately entwined with life, movement, and activity, but mostly goes unnoticed. In particular situations, it becomes the focus of our attention. When exercising, meditating, giving birth, or practising yoga, breathing is a focal point and becomes bound by particular techniques.Breathing is also central to other activities: it punctuates poetry, is central to singing and playing many musical instruments, and occasionally makes the headlines in cases of erotic asphyxiation gone wrong. Usually, though, breathing silently, tacitly, and obligingly accompanies everything we do, from shopping to sex.Breathing is culturally significant in various ways. We breathe deeply to take in the fresh seaside air to mark our departure from polluted cities; we take a deep breath to calm ourselves; we celebrate a baby's first breath marked by a shrill cry; and we witness a loved one's last exhalation as their departure from the world. Breath enables speech and expressive gestures such as sighing and groaning. Breath energises movement and enables bodily activity. Nothing is possible without breath; breathing marks life. As contemporary poet Robert Gittings puts it, breath is “a stubborn distinction from the dead”.In the respiratory clinic, breath, which normally goes unnoticed, turns into pathological breathlessness. According to improving and integrating respiratory services, 25% of attendees to emergency departments, 62% of elderly people, and almost all people with COPD (around 95%) report breathlessness. Attempts are made by clinicians to assess and measure breathlessness using questionnaires, lung function tests, gas diffusion chambers, and the arterial blood gas test. However, objective and subjective measures of breathlessness are frequently disconnected.Patients report that breathlessness is all-consuming and life-changing, as Carel documents in her book Illness. But, breathlessness has for the most part been subsumed by objective measurements. Pathological breathlessness is pervasive and has multilayered meanings for patients. Much is known about respiratory physiology and pathophysiology, but the phenomenological (experiential, subjective) understanding of breathing and of breathlessness and its cultural and metaphorical significance are poorly understood.Why is this important for those who work in a clinical setting? First, the invisibility of breathlessness is a well recognised problem. Breathless individuals are stigmatised, diagnosis is poor (eg, the “missing millions” who have COPD but are undiagnosed), and research funding has not been prioritised for conditions that are regarded as self-inflicted (eg, caused by smoking) and difficult to treat in their chronic form.Second, breathlessness is a subjective experience, a lived symptom. But, the clinical approach is to first establish the underlying condition and treat it, relegating the breathlessness itself to a secondary position. There is also a tendency to stick to objective physiological measures, largely because of the limited understanding of this subjective experience, which does not address the complexity of breathlessness. This tendency leaves many patients with unexplained and refractory breathlessness with few options other than opioids, for which the precise mechanisms of providing relief are still unclear but are thought to include altered sensation of breathlessness (through actions on the limbic system and amygdala) and suppression of respiratory drive (through actions on the respiratory centre in the medulla). This problem also contributes to the invisibility of breathlessness, with patients and doctors having a sense of powerlessness when faced with chronic breathlessness. Patients are less inclined to report symptoms and doctors are less likely to ask about them.Third, very little robust research into the complex origins of the cognitive and affective aspects of breathlessness has been done. The American Thoracic Society has stated that “more than at any time in the past, there is a need for interdisciplinary approaches to research into dyspnoea mechanisms and treatments that will accelerate translation of research findings into clinical practice.”The Life of Breath project, a 5 year project funded by the Wellcome Trust, aims to address the need for effective interdisciplinary research on both breathing and breathlessness. The project brings together a multidisciplinary team, including medical humanities scholars, clinicians, medical anthropologists, medical historians, cultural theorists, artists, and philosophers. We start from the premise that the ideas, beliefs, and cultural contexts described, within which patients experience and live with their breathlessness, profoundly affect the experience of breathlessness as a medical symptom.Neuroscientists working in this field are beginning to map out how the physiology of breathlessness links with sites in the brain that not only deal with the autonomic control of breathing but also the affective and cognitive influences on it, situated largely in the cortex. Clinicians now accept the central role of thoughts and emotions on how breathlessness is perceived. The project will not only investigate these but will also widen its scope to aspects of belief and ideation that might still be inexplicable within a clinical context. We hope to show, through an iterative co-learning process, that clinical science and the humanities can work together for the benefit of patients.The first phase of the project examines breath and breathlessness in literary and cultural history, philosophy, and medical history. Surprisingly little has been written on breathing and on the symptoms of breathlessness from these perspectives. No comprehensive phenomenology of breathlessness exists to date.In the second phase of the project we introduce empirical work: a study of aware breathers (athletes, singers) and respiratory patients will uncover differences between non-pathological and pathological breathlessness. An ethnographic study will look at the effect of the clinic on breathless patients in terms of their bodily responses, the language they use, and ways of understanding their condition. As the outputs from humanities research and medical anthropology emerge, we will discuss these with our clinical collaborators and examine how they might inform clinical research and practice.The project will also investigate how we might influence the neuroscientific understanding of breathlessness. We anticipate that our work with aware breathers and their normal experiences of breathlessness might point to a productive line of research that challenges the use of the pain road map that has been influential in this field. Neuroscientists working with physiologists have used a well recognised multidimensional model of pain to guide the construction of a similarly complex model for breathlessness. But the distinctions between pain and breathlessness as phenomena need to be clearly articulated, starting from the recognition that breathlessness, unlike pain, is for many people a pleasant experience. We are interested in whether good breathlessness, that imbues people with a healthy sense of bodily wellbeing during sporting activity (for example), is physiologically and neurologically distinct from bad breathlessness, which is likened by sufferers to suffocation, is experienced as a loss of control, and is distinctly unpleasant and more like pain. If there is a distinction, we might be able to propose possible new mechanisms for drug intervention to relieve breathlessness.View Large Image Copyright © 2015 B. Boissonnet/BSIP/Science Photo LibraryBreathing is a universal human experience: we need air for everything we do and being without it is a terrible thing. As early as the fourth century BC, the Aristotelian treatise writer of On Breaths emphasised the omnipresence of wind, air, and breath: “Wind in bodies is called breath, outside bodies it is called air […]. For everything between earth and heaven is full of wind […] the earth is a base for air and there is nothing that is empty of air.”The project's hypothesis is that breathing and its pathological counterpart, breathlessness, are mutually implicated and mutually illuminating. In claiming this, we join an important tradition that turns to pathology to illuminate normalcy. To understand what a certain brain area does, we study stroke victims with brain damage in the relevant area. To understand the importance of early years nurturing, we study its deprivation. To study breath, we will look closely at breathlessness to make the invisible visible.All that is fascinating about breath is encapsulated in this stanza by Rilke: “Breath, you invisible poem—pure exchange, sister to silence, being and its counterbalance, rhythm wherein I become” Rainer Maria Rilke, Sonnets to Orpheus, Book IIBreath is essential to life, but invisible; it is participatory and mutual and involves us in the world; it enables both speech and silence; it marks our coming into being and our end. Breath marks the rhythm of life, the rhythm of becoming. It is this that the Life of Breath project aims to study.We declare no competing interests. The German poet Rainer Maria Rilke wrote of breath as “an invisible poem”. Indeed, breath is invisible literally but also metaphorically; it is something we take for granted. Breath is intimately entwined with life, movement, and activity, but mostly goes unnoticed. In particular situations, it becomes the focus of our attention. When exercising, meditating, giving birth, or practising yoga, breathing is a focal point and becomes bound by particular techniques. Breathing is also central to other activities: it punctuates poetry, is central to singing and playing many musical instruments, and occasionally makes the headlines in cases of erotic asphyxiation gone wrong. Usually, though, breathing silently, tacitly, and obligingly accompanies everything we do, from shopping to sex. Breathing is culturally significant in various ways. We breathe deeply to take in the fresh seaside air to mark our departure from polluted cities; we take a deep breath to calm ourselves; we celebrate a baby's first breath marked by a shrill cry; and we witness a loved one's last exhalation as their departure from the world. Breath enables speech and expressive gestures such as sighing and groaning. Breath energises movement and enables bodily activity. Nothing is possible without breath; breathing marks life. As contemporary poet Robert Gittings puts it, breath is “a stubborn distinction from the dead”. In the respiratory clinic, breath, which normally goes unnoticed, turns into pathological breathlessness. According to improving and integrating respiratory services, 25% of attendees to emergency departments, 62% of elderly people, and almost all people with COPD (around 95%) report breathlessness. Attempts are made by clinicians to assess and measure breathlessness using questionnaires, lung function tests, gas diffusion chambers, and the arterial blood gas test. However, objective and subjective measures of breathlessness are frequently disconnected. Patients report that breathlessness is all-consuming and life-changing, as Carel documents in her book Illness. But, breathlessness has for the most part been subsumed by objective measurements. Pathological breathlessness is pervasive and has multilayered meanings for patients. Much is known about respiratory physiology and pathophysiology, but the phenomenological (experiential, subjective) understanding of breathing and of breathlessness and its cultural and metaphorical significance are poorly understood. Why is this important for those who work in a clinical setting? First, the invisibility of breathlessness is a well recognised problem. Breathless individuals are stigmatised, diagnosis is poor (eg, the “missing millions” who have COPD but are undiagnosed), and research funding has not been prioritised for conditions that are regarded as self-inflicted (eg, caused by smoking) and difficult to treat in their chronic form. Second, breathlessness is a subjective experience, a lived symptom. But, the clinical approach is to first establish the underlying condition and treat it, relegating the breathlessness itself to a secondary position. There is also a tendency to stick to objective physiological measures, largely because of the limited understanding of this subjective experience, which does not address the complexity of breathlessness. This tendency leaves many patients with unexplained and refractory breathlessness with few options other than opioids, for which the precise mechanisms of providing relief are still unclear but are thought to include altered sensation of breathlessness (through actions on the limbic system and amygdala) and suppression of respiratory drive (through actions on the respiratory centre in the medulla). This problem also contributes to the invisibility of breathlessness, with patients and doctors having a sense of powerlessness when faced with chronic breathlessness. Patients are less inclined to report symptoms and doctors are less likely to ask about them. Third, very little robust research into the complex origins of the cognitive and affective aspects of breathlessness has been done. The American Thoracic Society has stated that “more than at any time in the past, there is a need for interdisciplinary approaches to research into dyspnoea mechanisms and treatments that will accelerate translation of research findings into clinical practice.” The Life of Breath project, a 5 year project funded by the Wellcome Trust, aims to address the need for effective interdisciplinary research on both breathing and breathlessness. The project brings together a multidisciplinary team, including medical humanities scholars, clinicians, medical anthropologists, medical historians, cultural theorists, artists, and philosophers. We start from the premise that the ideas, beliefs, and cultural contexts described, within which patients experience and live with their breathlessness, profoundly affect the experience of breathlessness as a medical symptom. Neuroscientists working in this field are beginning to map out how the physiology of breathlessness links with sites in the brain that not only deal with the autonomic control of breathing but also the affective and cognitive influences on it, situated largely in the cortex. Clinicians now accept the central role of thoughts and emotions on how breathlessness is perceived. The project will not only investigate these but will also widen its scope to aspects of belief and ideation that might still be inexplicable within a clinical context. We hope to show, through an iterative co-learning process, that clinical science and the humanities can work together for the benefit of patients. The first phase of the project examines breath and breathlessness in literary and cultural history, philosophy, and medical history. Surprisingly little has been written on breathing and on the symptoms of breathlessness from these perspectives. No comprehensive phenomenology of breathlessness exists to date. In the second phase of the project we introduce empirical work: a study of aware breathers (athletes, singers) and respiratory patients will uncover differences between non-pathological and pathological breathlessness. An ethnographic study will look at the effect of the clinic on breathless patients in terms of their bodily responses, the language they use, and ways of understanding their condition. As the outputs from humanities research and medical anthropology emerge, we will discuss these with our clinical collaborators and examine how they might inform clinical research and practice. The project will also investigate how we might influence the neuroscientific understanding of breathlessness. We anticipate that our work with aware breathers and their normal experiences of breathlessness might point to a productive line of research that challenges the use of the pain road map that has been influential in this field. Neuroscientists working with physiologists have used a well recognised multidimensional model of pain to guide the construction of a similarly complex model for breathlessness. But the distinctions between pain and breathlessness as phenomena need to be clearly articulated, starting from the recognition that breathlessness, unlike pain, is for many people a pleasant experience. We are interested in whether good breathlessness, that imbues people with a healthy sense of bodily wellbeing during sporting activity (for example), is physiologically and neurologically distinct from bad breathlessness, which is likened by sufferers to suffocation, is experienced as a loss of control, and is distinctly unpleasant and more like pain. If there is a distinction, we might be able to propose possible new mechanisms for drug intervention to relieve breathlessness. Breathing is a universal human experience: we need air for everything we do and being without it is a terrible thing. As early as the fourth century BC, the Aristotelian treatise writer of On Breaths emphasised the omnipresence of wind, air, and breath: “Wind in bodies is called breath, outside bodies it is called air […]. For everything between earth and heaven is full of wind […] the earth is a base for air and there is nothing that is empty of air.” The project's hypothesis is that breathing and its pathological counterpart, breathlessness, are mutually implicated and mutually illuminating. In claiming this, we join an important tradition that turns to pathology to illuminate normalcy. To understand what a certain brain area does, we study stroke victims with brain damage in the relevant area. To understand the importance of early years nurturing, we study its deprivation. To study breath, we will look closely at breathlessness to make the invisible visible. All that is fascinating about breath is encapsulated in this stanza by Rilke: “Breath, you invisible poem—pure exchange, sister to silence, being and its counterbalance, rhythm wherein I become” Rainer Maria Rilke, Sonnets to Orpheus, Book II Breath is essential to life, but invisible; it is participatory and mutual and involves us in the world; it enables both speech and silence; it marks our coming into being and our end. Breath marks the rhythm of life, the rhythm of becoming. It is this that the Life of Breath project aims to study. We declare no competing interests. Approaching the final breath“If there's such a thing as a ‘good death’, then what's a ‘bad death’?”, asked Richard Holloway, former Primus of the Scottish Episcopal Church, to start A Good Death event at the 2017 Edinburgh International Book Festival. “We would probably all say a bad death would be an excruciatingly painful death or a lonely death. But I wonder if there's now a new version of the bad death that is the unintended consequence of good intentions. We used to die at home, surrounded by family and friends; now we're more likely to die in hospital wired up to machines, surrounded by doctors, many of whom see death as a challenge to their professionalism and they keep too many of us going for too long”. Full-Text PDF Breathlessness: the rift between objective measurement and subjective experienceBreathlessness is a common term familiar to all of us. Who hasn't felt breathless when running to catch a bus or rushing up several flights of stairs? It is a sensation we all recognise and yet most people give it very little consideration. Until I became ill with a respiratory disease (lymphangioleiomyomatosis, or LAM), I never gave breathlessness, or indeed breathing, more than a passing thought. Full-Text PDF Invisible suffering: breathlessness in and beyond the clinic—a replyWe were delighted to read the Spotlight article by Havi Carel and colleagues1 about the invisible suffering of breathlessness. Chronic refractory breathlessness2 affects millions of people worldwide, but has not yet received the same attention, either clinical or research, as the causative disorders. Carel's Article resonates strongly with a growing body of studies focusing on breathlessness itself arising from interdisciplinary research collaborations between respiratory physicians, physiologists, palliative-care specialists, nurses, psychologists, neuroradiologists, geneticists, clinical pharmacologists, physiotherapists and sociologists. Full-Text PDF