Patient perceptions of severe COPD and transitions towards death: a qualitative study identifying milestones and developing key opportunities

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a slowly disabling illness, with functional limitations and a high burden of symptoms. Palliative care services focus on quality of life for those facing life-limiting illness. Patients with COPD often see their illness as a ‘way of life’, not as a life-threatening illness, which makes the interface difficult. AIMS: The aim of this study was to explore the experience of patients with advanced COPD after a life-threatening event, particularly focusing on end-of-life issues. METHODS: Qualitative methods were used to capture patient experiences. Patients admitted for noninvasive ventilation for COPD were recruited and interviewed in their homes following discharge. The interview schedule explored the participants' understanding of their illness, concerns and plans, exploring end-of-life issues and perceptions of palliative care. RESULTS: Participants were recruited until themes were saturated. Six transition points or milestones emerged: loss of recreation, home environment, episodes of acute care, long-term oxygen treatment, panic attacks, and assistance with self-care were common themes throughout the narratives. CONCLUSIONS: Milestones accumulate in no particular order. They can be easily recognised and allow health professionals to develop a common language with their patients. In advancing COPD, milestones may trigger the reassessment of goals of care and integration of a palliative approach.