Improving quality of care for end-stage respiratory disease: Changes in attitude, changes in service

The illness trajectory for many patients with severe respiratory disease is characterized by steady decline. Yet most healthcare resources are poured into managing acute exacerbations that are only temporarily effective. Further, ‘bad deaths’ can result from inappropriate medical interventions at times of crisis. In this article, we describe a range of changes in attitudes, behaviour and service provision that together focus on improving quality of care for respiratory patients with frequent crises. These changes include prognostic conversations, developing and implementing anticipatory care plans both in hospital and in the outpatient settings, and establishing a supportive care clinic devoted to complex disease and optimizing palliative care. The underpinning philosophy is that common sense and compassion should motivate broader and more flexible care much more than adherence to the ‘curative–restorative’ guidelines-based model.