Lay summary
Only 2 – 9% of patients with chronic obstructive pulmonary disease (COPD) ever receive the benefit of specialist palliative care. In a previous research study, people with severe COPD identified six milestones that occur in a cumulative way as they get closer to death. These are loss of recreation, changes to the home environment, episodic acute care, long-term oxygen treatment, panic attacks, and difficulties with self-care. These milestones may represent opportunities to change the focus of care and plan future management. This research will evaluate the perspectives and preferences of patients, carers and members of the healthcare team involved in the care of people with advanced COPD using the six milestones. The aim is to develop a detailed, integrated and resource efficient model of care which enables positive experiences for all people with COPD in their last year of life.