The last year of life of COPD: a qualitative study of symptoms and services

Helena Elkington, Patrick White, Julia Addington-Hall, Roger Higgs, Catherine Pettinari
Respiratory Medicine 2004, 98 (5): 439-45

INTRODUCTION: To assess the symptoms experienced and their impact on patients' lives in the last year of life of COPD, and to assess patients' access to and contact with health services.

METHOD: Qualitative analysis using the framework approach of in-depth interviews with 25 carers of COPD patients who had died in the preceding 3-10 months.

RESULTS: The average age of death was 77.4 years. The majority of patients died in hospital. The major symptom reported by the carers was breathlessness which impaired the deceased's mobility and contributed to their being housebound. Anxiety and panic were also associated with breathlessness. Depression was reported. Oxygen, though beneficial, was seen to impose lifestyle restrictions due to increasing dependence on it. Some patients only health care contact was through repeat prescriptions from their GP whereas three had regular follow up by a respiratory nurse specialist who linked community and secondary care. Overall, follow-up, systematic review or structured care were uncommon.

DISCUSSION: Breathlessness causes major disability to patients with COPD in the last year of life. The expertise of palliative care in treating breathlessness may be valuable in these patients many of whom lacked regular health service contact in the year before death. Patients who are housebound with high levels of morbidity require community health services. Respiratory nurse specialists were rarely involved in the patients' care and may provide a link between the GP, the chest physician and the palliative care team.

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