Living with severe hypoxic COPD: the patients' experience.

AIM: To describe the experience of living with severe oxygen-dependent chronic obstructive pulmonary disease (COPD).
METHOD: Unstructured, tape-recorded interviews were used to collect data from 10 patients with COPD. The interviews were undertaken in the patients' own homes.
RESULTS: Recurrent themes emerged from the data. All participants reported physical and emotional problems, mainly caused by breathlessness. Half of the sample discussed feeling depressed and 80 per cent discussed how COPD had affected their family life. Participants discussed how difficult it was to stop smoking, and the guilt they felt when they realised their smoking had caused their disease. Half of the sample discussed needs, such as better communication between health professionals and patients about the diagnosis and prognosis. Long-term oxygen therapy was described in negative terms by 10 per cent of the sample.
CONCLUSION: Severe COPD has an impact on all aspects of a patient's quality of life. A palliative, interdisciplinary approach from primary and secondary care, social services and the voluntary agencies needs to be adopted at an earlier stage of the disease. Patients should be encouraged to participate in the planning and management of their treatment to improve their experience of the disease in the future.