Breathlessness is the feeling of being out of breath as your lungs work harder to draw in more oxygen. The symptom often persists despite treatment of the underlying condition. Breathlessness is frightening and distressing for patients, families and carers. It affects over two million people in the United Kingdom and 75 million people across the world as a major cause of suffering.

The Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s runs a longstanding programme of research that tackles breathlessness across advanced diseases, including respiratory diseases, cancers and other serious conditions. This work has led to a transformation of how breathlessness is recognised, treated and managed in both the UK and abroad.

Tackling inequities

Research in the Cicely Saunders Institute raised the visibility of breathlessness as a distressing and isolating symptom. Before 2010, most understanding and experience in the management of and services for breathlessness came from patients with advanced cancer. There was limited attention to breathlessness at the end of life for people with other conditions such as Chronic Obstructive Pulmonary Disease (COPD) and heart diseases. Researchers at the Cicely Saunders Institute revealed that breathlessness was very common across many diseases, with high and longstanding burden, as people with chronic conditions experience symptoms over long periods.

Effective, drug-free support for patients and families

Researchers at the Institute brought together all the evidence about the most effective treatments known for breathlessness. They discovered that non-drug interventions, such as hand-held fans and walking aids, could be effective in improving mobility, self-care and reducing breathlessness for people with advanced diseases. These findings led to the development of a short-term holistic breathlessness support service in London - which looks at a person’s whole experience rather than just the physical aspects - to help patients manage their breathlessness at home

The Breathlessness Support Service is a multi-professional scalable intervention which is helping patients and their carers live better with breathlessness.

The service provides outpatient clinic visits to the Cicely Saunders Institute and a home assessment period. Patients are seen by respiratory and palliative care physicians and their carer has access to a social worker. There are follow up visits to a patient’s home by an occupational therapist and a physiotherapist.

Also, as part of this service, patients are given a support pack to use at home cards on various activities which can help ease breathlessness, such as breathing exercises, positions, sleeping habits, muscle strengthening and distraction techniques which can all help ease breathlessness. It can also include a fan, as a cool draft of air may help reduce the feeling of breathlessness.

Analysis of the support service found that patients were less distressed and depressed due to breathlessness. In interviews, people said they felt more in control and more confident in managing their breathlessness, were less isolated, and were able to get back to their daily activities. Patients and their carers, including family, said they appreciated the tailored education that helped them understand their breathlessness better. They particularly valued the simple management tips and the expert staff who took a dignified approach to their care. This led the way for others, who developed services with similar effects.

Inspiring health services beyond the UK

The support service has improved the quality of care, dignity and lives of patients, their families and those that support them. It has fostered national and international collaborations, building on to improve the lives of those living with breathlessness, as well as influencing care quality standards and commissioning guidance. Its success has led to this approach being adopted and influencing the development of a variety of similar services elsewhere in the UK and other countries. Examples include the Early Integrated Palliative Home Care (PHC) for end-stage Chronic Obstructive Pulmonary Disease (COPD) patients in Belgium, The Munich Breathlessness Service (MBS) in Germany and the Breathlessness Management Service at St Christopher’s Hospice in London.

The work continues

For researchers at the Cicely Saunders Institute, work continues to significantly improve the treatment of severe breathlessness. This includes teaching and disseminating learning and partnering with societies (such as the British Thoracic Society, European School of Oncology, American Thoracic Society, European Respiratory Society and European Lung Foundation). In addition, they have BETTER-B, a large-scale project which aimed to find out whether mirtazapine, currently used as an antidepressant, is an effective treatment to reduce severe breathlessness even when people are not depressed. This research recruited 225 patients and 75 caregivers across the UK, Europe, Australia and New Zealand. The project has engaged with patient-led groups and clinicians across these countries to drive forward further improvements on how breathlessness is managed by respiratory and palliative care specialists. The findings are due to be published soon.