The management of chronic breathlessness in patients with advanced and terminal illness

The review of the management of chronic breathlessness in advanced disease was timely and welcome. As the authors point out, chronic refractory breathlessness has long been recognised as a major cause of human suffering and health care expenditure (1, 2, 3). The latter may be futile, with frequent admissions to hospital out of hours triggered when anxiety about breathlessness episodes distresses both patient and carer beyond bearing. In the current hospital environment, and with the pressures in primary care, insufficient attention is often paid to active management of psychosocial issues such as anxiety, depression, carer stress and distress, and to the implementation of non-pharmacological self-management strategies such as physical and mental activity, relaxation techniques, breathing exercises, education and information. The recommendation both for comprehensive palliative care and attention to psychosocial issues was welcome but we would contend that these were not explained in enough detail for the general medical reader to take them forward (4) nor given enough emphasis for their value to be recognised. It would also be helpful for the general medical reader to know that the sensation is mediated through the CNS (5) to understand the rationale for these techniques which reduce the impact of the sensation of breathlessness even when it cannot be removed. Disproportionate space was used to explain the role and limitations of the minimally effective oxygen and partially effective opioids (most useful in the severe chronic refractory breathlessness) when there is good evidence (and more emerging) of the effectiveness of non-drug interventions such as the hand-held fan (6) – which, as the authors point out, has no ill effects, can increase self efficacy and promote activity as it shortens the period of breathlessness. It would have been helpful to outline these helpful non-drug approach in more detail, in on-line supplements at least, in an article to help clinicians practically improve the care of breathless patients. The on-line references are noted.

The terms non-pharmacological, complex intervention and palliative care encompass a wide range of psychosocial interventions that can play an important role in reducing suffering, improving the quality of care and reducing the costs of successfully helping people living with chronic refractory breathlessness. What they entail may not be immediately apparent to general readers.

Rigorous mixed methods data from a number of studies (1, 2,7, 8, 9, 10), carried out over ten or more years have demonstrated again the psychosocial distress associated with chronic refractory breathlessness and the possibilities for relieving them:the hand-held fan, emotional and practical support for carers (who bear significant physical and psychological burdens, sometimes over many years), designing rituals to help individuals manage episodes of frightening breathlessness, education and individualised exercise training. The emphasis on pulmonary rehabilitation was welcome - it is unevenly provided and, in some areas, not available to those who do not have COPD. A recent RCT in patients with advanced cancer (10) has shown that pre-dominantly non-pharmacological complex interventions for breathlessness is not only clinically helpful beyond normal care, but also cost-effective. Given the current interest in ‘patient activation’ to self-manage chronic conditions, we feel that these need greater emphasis and welcome the authors’ call for more research to help the millions of people affected by this distressing symptom.

Sara Booth, Honorary Associate Lecturer and Consultant, c/o Elsworth House, Cambridge University Hospitals NHSFT

Morag Farquhar, Senior Research Associate & NIHR Career Development Fellow, Department of Public Health & Primary Care, University of Cambridge,

Anna Spathis, Consultant Physician in Palliative Medicine, CUHNHSFT

Claudia Bausewein, Professor of Palliative Medicine, University of Munich

Chloe Chin, ACF CUHNHSFT

Kyle Pattinson, Associate Professor, Senior Clinical Research Fellow, Nuffield Department of Clinical Neurosciences, University of Oxford

1 Booth S, Silverster S, Todd C. Breathlessness in cancer and chronic obstructive pulmonary disease: Using a qualitative approach to describe the experience of patients and carers Palliative and Supportive CareDecember 2003 (4) 337-344

2 Seamark DA, Blake SA, Seamark CJ, Halpin DMG Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers An interpretative phenomenological analysis Med October 2004 vol. 18 no. 7 619-625

3 Johnson M, Currow D, Booth S Prevalence and assessment of breathlessness in the clinical setting Expert Review of Respiratory Medicine April 2014, Vol. 8, No. 2 , Pages 151-161 (doi:10.1586/17476348.2014.879530)

4 Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide, BMJ 2014;348:g1687 4

5 Herigstad M, Hayen A, Wiech K, Pattinson KT. Dyspnoea and the brain. Respir Med. 2011 Jun;105(6):809-17

6 Galbraith S, Fagan, P, Perkins P, Lynch A, Booth S. Does the use of a handheld fan improve chronic dyspnea? A randomized, controlled, crossover trial. Pain Symptom Manage. 2010 May;39(5):831-8. doi: 10.1016/j.jpainsymman.2009.09.024.

7 Booth S, Farquhar M, Gysels M, Bausewein C, Higginson IJ. The impact of a breathlessness intervention service (BIS) on the lives of patients with intractable dyspnoea: a qualitative Phase I study.  Palliative and Supportive Care 2006; 4: 287-93.

8 Farquhar M, Higginson IJ, Fagan P, Booth S. Results of a pilot investigation into a complex intervention for breathlessness in advanced chronic obstructive pulmonary disease (COPD): brief report.  Palliative and Supportive Care 2010;8(2): 143-9.

9 Booth S, Moffat C, Farquhar M, Higginson IJ, Bausewein C, Burkin J. Developing a breathlessness service for patients with palliative and supportive care needs, irrespective of diagnosis. Journal of Palliative Care 2011;27(1): 28-36.

10 Farquhar M, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd C, Booth S. Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed method randomised controlled trial. BMC Medicine 2014 12:194.