Breathlessness Programme
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 of breath when you have done nothing at all, not only that, it doesn’t go away 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 third year, the Breathlessness programme has many strands. Led by Marjolein Gysels and Irene Higginson of the Department of Palliative Care, Policy and Rehabilitation at King's College, it has designed several projects in which the ‘experience’ of breathlessness is central. In a first 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 breathlessness programme has an international orientation and uses innovative designs to understand this complex symptom. Claudia Bausewein (Research Associate) has set up a project in several settings in Munich (Germany) and is now working with patients with cancer and COPD over a period of time to find out how their experiences might change and how patients and relatives cope in the long term.
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. The team is working on a Cochrane review to assess the effectiveness of these therapies and who they will benefit most. Sometimes very simple devices can provide relief for breathlessness such as a small fan, pocket size, blowing cool air in someone’s face. Claudia Bausewein is now testing this with patients. 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.
Trial of a hand held fan
For more information, contact:
- marjolein.gysels@kcl.ac.uk
- claudia.bausewein@kcl.ac.uk
- faridamalik@doctors.org.uk