;

Managing breathlessness in advanced illness

16 July 2024

Health

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

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 has led to a number of outputs and activities including the development of resources that help with managing breathlessness.

Breathlessness Support Services

Researchers at the Institute brought together all the evidence about the most effective treatments known about breathlessness, resulting in the development of holistic Breathlessness Support Services (BSS).

As part of BSS, patients and those important to them, such as a family members, receive a comprehensive assessment and treatment plan from a team of professionals including palliative care, respiratory, rehabilitation and occupational therapy specialists. The team then provide a tailored treatment plan for the patient, including non-drug treatments such as muscle strengthening, walking aids, breathing training, information about breathlessness, physiotherapy, a crisis management plan, as well as drug treatments where necessary. Everyone is given a ‘Breathlessness Toolkit’, to support self-management strategies, including positions to get in when breathless, a mantra to use to help manage a crisis, a hand-held fan and a water spray bottle (both to cool the face).

BSS has influenced clinical services and policies nationally and internationally, and is recommended by leading guidelines.

Please talk to your GP, health professional or local hospice to see what breathlessness support is available to you locally.

Useful resources

Some BSS resources that you may find helpful in breathlessness management are listed below:

Free e-resources for professionals:

We are also currently developing resources to better meet the needs of those from ethnically diverse groups, which will be launched at the end of 2024.

With my illness, breathlessness is the main and most problematic symptom for me. My mother also had suffered from breathlessness – she had terminal cancer. And my 90-year-old uncle currently suffers from it – he has asbestos on the lungs. It is such a debilitating symptom and has a huge impact on quality of life. Anything to reduce the impact of this symptom would have been a great help to me and my family.– Margaret Ogden, a Cicely Saunders Institute patient representative who suffers from breathlessness

SELF-BREATHE

SELF-BREATHE, an online breathlessness self-management intervention. SELF-BREATHE was developed by Dr Charles Reilly with patients living with chronic breathlessness. SELF-BREATHE offers patients education and non-drug treatments self-management interventions targeting breathlessness during daily life and at the point of crisis. SELF-BREATHE is feasible to deliver and valued by patients. Dr Reilly is currently undertaking a large multi-centre trial to see if SELF-BREATHE improves breathlessness.

“SELF-BREATHE was good. When you have a breathing attack you automatically just clam up and panic, having SELF-BREATHE to hand helped, especially the breathing exercises and relaxation.– Female, COPD, 41-50 years

BETTER-B programme

When breathlessness is no longer responsive to non-drug treatment, there may be the need to consider drug treatment options. Currently, there are few effective drug treatments options, thus chronic breathlessness represents a huge unmet need.

An international group of breathlessness experts from palliative care and rehabilitation led by Professor Irene Higginson at the CSI carried out the BETTER-B programme of work funded by the European Commission to see whether an antidepressant, mirtazapine can help in managing breathlessness when non-drug treatments are no longer sufficient. The BETTER-B programme had at its core an international, multicentre, randomised controlled trial to test the effectiveness and cost-effectiveness of mirtazapine in patients with chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD). The BETTER-B programme also included an online survey of physicians to understand current clinical management of breathlessness, the production of European wide guidance on the management of breathlessness in palliative and end of life care as well as interviews with trial participants to understand their experiences.

The BETTER-B survey found variation in the clinical management of breathlessness by palliative medicine and respiratory medicine physicians across Europe. The trial results and Europe-wide guidance are due to be published soon.

For further information on the BETTER-B programme, please visit the BETTER-B website.