Objective: To investigate and document the effects of
breathlessness on the everyday lives of patients with cancer
and COPD and their carers. This subject has been little researched,
although dyspnoea is recognized as a disabling, distressing symptom.
The number of breathless people is increasing as patients with all
types of cardio-respiratory disease live longer.
Methods: Patients with severe COPD and cancer and their
carers were interviewed at home using a semistructured format to record
their perceptions of the impact of breathlessness, the help they had
received from medical and caring services, and their ideas on how these
could be improved.
Results: 10 patients with COPD (6 male) and 10 with cancer
(6 male) and their spouses were interviewed. All patients found
breathlessness frightening, disabling, and restricting. Patients
developed a stoical, philosophical approach in order to live with
dyspnoea and the difficulties it imposed: this was also an important
way of reducing the emotional impact of breathlessness. Patients'
spouses suffered significantly, experiencing severe anxiety and
helplessness as they witnessed their partners' suffering and felt
powerless to reduce it. The restrictions imposed by breathlessness
affected their lives profoundly. Support of all kinds, practical,
medical, and psychosocial was highly valued but was provided
inconsistently and sporadically. Where help was given it came most
frequently from general practitioners (GPs, family physicians) and
specialist respiratory nurses.
Significance of results: This study is the first to document
the psychosocial needs of carers, which are not adequately recognized
or addressed at present. Patients and carers may feel most isolated and
need support outside the working hours of most services and future
provision needs to reflect this. Patients with cancer experience a more
rapid onset of breathlessness. More clinicians need to be educated in
the management of chronic breathlessness so known helpful strategies
are more widely employed.