"It just stops your life, stops you from living."
This quote from an anonymous patient sums up the experience of millions of sufferers of a health problem that’s rarely recognised or even discussed, yet has a major impact on their lives. Simply put, these people can’t catch their breath. And when the problem gets worse it can lead to a crisis situation. In fact, it may be responsible for as many as 20% of ambulance trips to the hospital.
But people who suffer from this chronic breathlessness could often manage the problem at home if only they were taught how to do so. This would avoid a potentially difficult experience for patients and prevent a lot of wasted health service time and money for emergency departments.
Several heart and lung conditions including cancer, heart failure and chronic obstructive pulmonary disease can lead to chronic breathlessness. It can be caused by variety of things depending on the underlying disease but the experience of living with the resulting breathlessness is the same.
The physical effects of breathlessness mean that lifting and movement are constrained and things like cooking, cleaning, decorating or carrying shopping may become very difficult, as can activities such as sex. This can limit sufferers’ roles at work and home and make them dependent on others, potentially affecting their mental health and sometimes turning their partners into carers. Sometimes breathlessness gets so bad it becomes a medical crisis, which can be very frightening, leaving sufferers and carers overwhelmed and unable to cope without professional help.
Researchers at the Wolfson Palliative Care Research Centre have shown that one fifth of all visits to an emergency department by ambulance were due to breathlessness crises. While most were necessary, one third of these trips saw the patient return home without being admitted to a hospital bed. Some of these people might have been able to avoid hospital altogether if they had help to use breathlessness crisis self-management methods. If only a small proportion of these patients could avoid coming to hospital, it could prevent tens of thousands of unnecessary visits a year.
People living with chronic breathlessness can be helped to find what we call “breathing space”, meaning to live well in spite of their symptoms. People have more breathing space if they can continue the things that are important to them, even if it means doing them differently. This can involve simply pacing themselves, prioritising which activities are most important each day and accepting rather than being frustrated by their situation.
Patients are often afraid of becoming breathless and assume there’s nothing they can do to manage it, and so they avoid doing things that might bring on their symptoms. When this happens their breathing space is reduced and their lives stop. To increase their breathing space, they should actually keep as active as possible in ways that don’t make their symptoms worse but help them to stay reasonably fit. For example, this could involve using mobility aids to help get around or keeping in touch with others by having them to visit rather than travelling long distances.
People with more breathing space also seek out professionals who can help them manage the breathlessness well themselves, rather than leaving it until there is a crisis. Useful techniques include breathing techniques and distraction methods, and the simple use of cool air across the face from a hand-held fan. These techniques must be used alongside prescribed medication and, if the breathlessness doesn’t ease, the patients should still seek medical help.
By making sure patients get the right treatments for breathlessness as well as for the underlying disease, they can achieve the best breathing space possible. In this way, many people find ways to cope with their chronic breathlessness and have satisfying lives. Their lives may change but they don’t stop. As one patient put it: “You can’t do the things you used to do, so you’ve got to say ‘Well, okay, what can I do?’ and do it.”
Ann Hutchinson, Research Fellow, University of Hull