To the fit, being breathless is usually the result of extreme exercise which then dissipates after a short while. Imagine what it would be like to be severely out and you remain breathless. This is one of the core symptoms in many advanced conditions; it is very distressing and frightening, and notoriously difficult to manage.
As studies have shown, there is more involved than the biological or physical processes that cause breathing problems. Curiously, some people experience severe breathlessness with little underlying disease while others with severe disease experience slight breathing problems. We now know that breathlessness is a subjective symptom, which means that only the person who suffers from it can fully perceive and make sense of it.
Now in its sixth year, the Breathlessness programme has many strands led by Irene Higginson, Marjolein Gysels and Claudia Bausewein of the Department of Palliative Care, Policy and Rehabilitation at King's College. The first studies led by Dr Gysels focused on the ‘experience' of breathlessness. In a first qualitative study breathlessness was explored from the perspective of patients themselves. Interviewing and listening to the stories of patients affected by different illnesses involving breathlessness (chronic obstructive pulmonary disease (COPD), cancer, motor neurone disease, heart failure) and their carers' helped to establish the differences in how breathlessness feels, what is important to patients and their families, how it impacts on their lives, and what those who provide care can learn from this.
"...and you feel as if you're going to die and you take everything off. You open all the windows up because you think if you can open all the windows and the doors, and take your clothes off, you're gonna be able to breathe better but it doesn't mean a thing. It is the most frightening thing that I have ever experienced."
The "invisibility of breathlessness" captures the problems that COPD patients have with access to care. Self-management of breathlessness of COPD patients was another topic that was highlighted in the interviews. Patients who coped successfully were involved in pulmonary rehabilitation and had adopted this as a way of life. It also became evident in the interviews that carers need to be included in opportunities for support provision in advanced illness.
Another strand in the Breathlessness Programme, led by Dr Bausewein studied the longitudinal course of breathlessness in patients with advanced cancer or severe COPD and described summary and individual breathlessness trajectories.
Of course, breathlessness also has serious consequences for the lives of people living with someone who suffers from it. Relatives have described caring for a breathless person as extremely demanding. It consumes them with practical tasks and overwhelming emotions like anxiety and fear. Farida Malik (Research Associate) is studying carers in order to find ways of helping them to reduce the burden of caring and support them in coping with their daily problems. As anxiety is especially intense at night, she pays particular attention to sleep.
"He'd have liked to go to our daughter's wedding but he couldn't breathe and was scared of going out."
What can we offer patients and carers who are affected by this distressing symptom? There is still no firm evidence on how to manage breathlessness with drugs in advanced disease but there are other therapies, such as nursing interventions, which show promising results. Two Cochrane Reviews have been conducted, one to assess non-pharmacological interventions in breathlessness in advanced disease and a second one on the assessment of the effectiveness of benzodiazepines in breathlessness.
Sara Booth from Addenbrookes Hospital in Cambridge has developed a service which combines different components such as physiotherapy, education and different treatments and Morag Farquhar is currently evaluating this service for its effectiveness. Earlier phases of evaluation showed that this service was highly valued by patients, carers and referring clinicians.
Based on the experiences of the Cambridge service, the team at King's is developing a multi-professional Breathlessness Support Service at King's College Hospital in close collaboration with the Respiratory Medicine Department. This service will, for the first time, include expertise from Palliative and Respiratory Medicine, and will be evaluated in a trial.
Sometimes very simple devices can provide relief for breathlessness such as a small fan, pocket size, blowing cool air in someone's face. Dr Sara Booth has tested this simple device in an RCT and Dr Claudia Bausewein has tested the fan in a longitudinal study.
Trial of a hand held fan
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