New recommendations for services for people living with chronic breathlessness in advanced disease have been developed and prioritised by people from a variety of professions and disciplines, including patient and carer representatives. Their recommendations emphasise the need for improved access to person-centred, multi-professional care, and support for carers to provide, or access, breathlessness management interventions.
Breathlessness is highly distressing for patients and their families, and is associated with anxiety, disability and social isolation. For people living with chronic respiratory conditions and other life-threatening illnesses, breathlessness increases with disease severity and often becomes chronic (i.e. no longer responds to treatment of the underlying condition).
People with advanced disease and chronic breathlessness can find it difficult to engage with existing lung rehabilitation services, but availability of alternatives such as holistic breathlessness services remains inconsistent. Our team at the Cicely Saunders Institute, King’s College London, brought together stakeholders from multiple specialities and professions, including patient and carer representatives, in order to find out their evidence-based recommendations for future practice.
Following an in-person workshop to develop the recommendations and an online survey to rate their agreement with them, stakeholders’ top scoring recommendations were as follows:
Clinical practice recommendations:
- Ensure breathlessness services are person-centred and flexible in terms of delivery (e.g. appointment location, time, and duration)
- Ensure breathlessness services are cross-cutting, drawing on relevant expertise from multiple disciplines, professions, and providers
- Work towards ensuring breathlessness services have the widest possible geographical coverage and access (e.g. travelling communities, people who are homeless, people living in care/nursing homes)
- Value symptom management in its own right, and be able to deliver, or refer patients for, breathlessness interventions
- Share breathlessness management skills with other health and social care professionals, and informal carers
- Acknowledge family and/or informal carers within breathlessness services and, where appropriate, actively encourage their participation in education and in management of the patient’s breathlessness
- Recognise informal carers in terms of their roles, importance, and support needs
For some, these stakeholders’ recommendations may provide reassurance around existing good practice, while for others it may inspire areas to develop and improve care for people with chronic breathlessness in advanced disease. More research is needed to understand the best models of care and educational strategies to meet these recommendations, but with priorities around person-centredness, multidisciplinary approaches and inclusion of carers very much in line with the philosophy of palliative care, bridging links with and learning from this field (as seen in many holistic breathlessness services) may be one way forward.
To find out more about our stakeholder consultation, please see the full paper in Chronic Respiratory Disease.
If you have any questions or would like to find out more, please get in touch via firstname.lastname@example.org or @Lisa_Brighton on Twitter.
Lisa Brighton is a PhD student at the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London.
Lisa Jane Brighton, India Tunnard, Morag Farquhar, Sara Booth, Sophie Miller, Deokhee Yi, Wei Gao, Sabrina Bajwah, William DC Man, Charles C Reilly, Margaret Ogden, Sylvia Bailey, Colleen Ewart, Irene J Higginson, Matthew Maddocks
First Published: December 30, 2018
Featured image credit: image used with permission of the author.