Psychosocial consequences of living with breathlessness due to advanced disease

Breathlessness is one of the most important symptoms of patients with advanced life-limiting disease, such as chronic obstructive pulmonary disease, chronic heart failure, cancer, or pulmonary fibrosis. Breathlessness has major implications for patients as well as their family caregivers. The present review provides an overview of recent knowledge concerning the psychological and social consequences of breathlessness, including behavioural responses to breathlessness, and the impact of breathlessness on the family caregiver.

Breathlessness results in avoidance of exertion and deterioration of functional status. Functional impairment leads to care dependency and social limitations, resulting in a change in social role. Anxiety is an emotional response to breathlessness, but also increases the perception of breathlessness. Family caregivers of patients have to cope with changes in daily life, witnessing breathlessness and adapt to new and challenging role as family caregiver.

The consequences of living with breathlessness are multidimensional and arise in all aspects of daily life of patients, their family caregivers and their social environment. Multidimensional treatment programmes should become widely available to support patients with advanced disease and their family caregivers in coping with the functional, psychological and social consequences of living with breathlessness.