Managing breathlessness in advanced illness

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:

• Fact sheet: Managing breathlessness
• Fact sheet: Hand-held fan
• Fact sheet: Positional techniques
• Fact sheet: Distraction techniques
• Fact sheet: Sleep hygiene
• Resource: Breathlessness poem

Free e-resources for professionals:

• E-BREATHE
• NHS England module on managing chronic breathlessness

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.

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.  

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. Furthermore, the BETTER-B trial enrolled 225 adults with severe breathlessness in COPD and/or ILD across 16 centres in seven countries. The BETTER-B trial results are now published by the Lancet Respiratory Medicine and found that despite showing promise in smaller studies, the antidepressant, mirtazapine, does not alleviate severe breathlessness when compared with placebo. Some people treated with mirtazapine experienced slightly more side effects and needed more care from hospitals and from their family members than those receiving placebo during the first two months of treatment.

Our findings raise questions about using medicines in a manner different from its licence. The following briefs contain information on the recommendations from our trial findings:

• Patient and carer brief (including translated versions on the European Lung Foundation website)
• Policy brief (including translated versions on the European Lung Foundation website)
• Clinician brief

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