Medical humanities and engagement
Chronic and pathological (refractory) breathlessness is debilitating for millions of people in the UK. Despite attempts to define breathlessness to capture its complex subjective nature, it is often reduced to a simple medical symptom or physiological problem. However, breathlessness is a much broader experience, created by diverse physiological inputs and mediated by emotional state, beliefs and expectations.
Life of Breath was a five-year (2015-2020) research project led by the University of Bristol and the University of Durham. Funded by the Wellcome Foundation, it explored breath and breathlessness in literary and cultural history, philosophy and medical history. At the core of the project was ‘Breathing Space’, where collaborators, including clinicians and experts by experience, met regularly to learn from each others’ perspectives, examine a wide variety of ideas about breath, breathing and breathlessness, and discuss research outputs in an interdisciplinary context.
They found that both healthcare professionals and those living with breathlessness may underestimate the complexities of perceiving breathlessness and they tend to view breathlessness as a quantifiable physiological phenomenon.
Objective measurement of respiratory disability can be difficult and misleading, as it fails to consider the complexity and intersecting causes of impaired lung function.
Breathlessness is a sensation involving the senses, such as movement, touch and sound. Sensory perception is a cultural act as well as a physical act, which is highly subjective. For example, two patients with the same lung function can experience different breath-related distress.
Mindfulness- and body-based approaches appear to target affective and sensory perceptions of breathlessness.
Breathlessness- specific holistic services are lacking across the UK although some notable, evidence-based examples exist e.g. the Cambridge Breathlessness Intervention Service, which provides multidisciplinary support to patients and their caregivers and trains healthcare professionals.
Arts & health approaches and forum theatre methods can help change practice by raising awareness about breathlessness; they also help build community, understanding and an opportunity for participants to express personal experiences.
