Researchers, clinicians, and service user representatives at Cicely Saunders Institute, King’s College London, have been gathering evidence on services for people with chronic breathlessness and advanced disease. Their findings are now published in Thorax and available in open access. Dr Sophie Miller, Palliative Medicine Registrar and King’s College London MSc student, explains.
“With my illness, breathlessness is the main and most problematic symptom for me. Also my mother had suffered from breathlessness – she had terminal cancer. And my 90-year-old uncle now currently suffers from it – he has asbestos on the lungs. It is such a debilitating symptom, having 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, patient and carer representative.
Breathlessness affects nearly all people living with chronic respiratory disease, and many others with advanced heart, neurological and malignant diseases. Most often with the people I see in practice, breathlessness persists despite optimal management of the person’s underlying condition. As Margaret’s quote illustrates, the ensuing anxiety, depression and social isolation are debilitating, impacting patients and their families and carers. (1, 2)
For professionals, identifying effective treatment options for breathlessness can be challenging. Pharmacological options are limited and services like supervised rehabilitation programmes can be difficult for people with advanced disease and high levels of disability to engage with.
So, how can we best support people living with chronic breathlessness in advanced disease, and their families?
Together with a team of researchers, clinicians, and service user representatives, we’ve been gathering evidence on what have been called ‘holistic’ services for people with chronic breathlessness and advanced disease.
These services typically draw upon palliative care, working together with multiple specialities and professionals. Treatments are selected based upon physical, psychological, social and spiritual needs of individual patients and their families, with a focus on non-pharmacological therapies (including breathing exercises, psychological support, hand-held fan and carer support). Patients typically receive these services for four to six weeks through face-to-face and phone contact. A leading example of one such service is the Breathlessness Intervention Service currently available in Cambridge: www.cuh.nhs.uk/breathlessness-intervention-service-bis.
Our review, published in Thorax, (3) identified 18 services like this across six countries. Our meta-analysis showed these services resulted in significant reductions in patients’ distress due to breathlessness and depression symptoms. Plus, there was a trend towards reduced anxiety and an improved sense of mastery over breathlessness. Although there were inconsistent effects on questionnaire measures of health status, physical function, or quality of life, patients and carers who had accessed these services described in interviews that they valued the tailored education, self-management interventions, and expert staff providing person-centred, dignified care.
As a palliative care clinician, I believe these holistic services can offer something valuable for the patients we manage who are just well enough to get out of the house, but not able to complete a supervised rehabilitation programme over multiple weeks. Further work is needed to identify whether individual components or the whole package are required to achieve the benefits seen, and to offer greater insight into cost effectiveness. However, whether adopting these as a new service or integrating the main principles and core components into existing services or clinics, this approach can prompt earlier integration of palliative care, and support people like Margaret, and their families, to live better with breathlessness.
To find out more
You can find more information and resources about supporting people with breathlessness, including free resources, from the Cicely Saunders Institute, King’s College London.
References and links
- Gysels MH, Higginson IJ. The lived experience of breathlessness and its implications for care: A qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliative Care 2011; 10:15.
- Farquhar M. Carers and breathlessness. Current Opinion in Supportive and Palliative Care 2017; 11 (3).
- Brighton, LJ, Miller, S, Farquhar, M, Booth, S, Yi D, Gao W, Bajwah S, Man WD, Higginson IJ, Maddocks M. Holistic services for chronic breathlessness in people with advanced disease: a systematic review and meta-analysis. Thorax 2018; 0: 1-12. http://dx.doi.org/10.1136/thoraxjnl-2018-211589.