More than a clinical sign or symptom: The experience of breathlessness in advanced illness


Session type:

Marjolein Gysels1,2
1Cicely Saunders Institute, King's College London, London, UK, 2Centre for Social Science and Global Health, University of Amsterdam, Amsterdam, The Netherlands


Breathlessness is a complex symptom to manage. Factors on multiple levels (physiological, psychological, social, environmental) interact, influencing perceptions of breathlessness, and possibly causing secondary physiological and behavioural responses. As a result, work on breathlessness, which initially focused exclusively on its clinical management, has more recently focused on the experience of breathlessness. Breathlessness causes considerable suffering for those experiencing it. It is associated with fear and anxiety and causes disability, loss of independence and social contact, and it forms a threat to people's everyday quality of life. It is responsible for high levels of hospital admission and consequently hospital death. Patients who suffer from breathlessness are insufficiently supported to adequately manage this symptom on a daily basis and they are ill prepared to cope with acute episodes. Within these limits of current care provision, a minority of people do manage to maintain an acceptable level of well-being. The ingredients of the self-care which they employ are instructive in finding successful strategies for relieving breathlessness. We will consider breathlessness as it is experienced in cancer, where it tends to be a subordinate concern to the disease status, which influences its perception and management. These findings have contributed to the development of the Breathlessness Support Service (BSS), which has recently been evaluated, and we will present the patient's view on the care received from this service.


We thank the team of the breathlessness programme and Cicely Saunders International whose funding supported the research on which this presentation is based. The intervention is funded by an NIHR-grant from Research for Patient Benefit (PBPG-0808-17311). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.