Unmet needs of people with end-stage chronic obstructive pulmonary disease: recommendations for change in Australia

Background Chronic obstructive pulmonary disease (COPD) is an increasing cause of mortality. However, people with COPD are unlikely to receive care that meets the needs of themselves or their carers at the end of life. Aims To explore the needs of people with end-stage COPD in South Australia and develop recommendations for a model of care. Methods Three related studies were undertaken: in Study 1, 15 people with advanced COPD and their carers were interviewed twice, 6 months apart; Study 2 investigated views of an Expert Panel and Study 3 conducted focus groups and interviews with service providers and community groups to examine service availability and accessibility. Results This project demonstrated that the needs of people with COPD are not being met. There was an absence of a coordinated pathway for support. Care was fragmented, episodic and reactive. The role of carers was poorly recognised. Health professionals identified the lack of a clear transition to an end-stage and significant barriers to obtaining support for activities of daily living. Communication issues were identified in all studies, including the absence of advance care planning conversations. Conclusions A flexible model of care is needed that assists people with COPD to navigate the health system. This should be patient centred and coordinated across primary, acute and community sectors. Neither respiratory nor palliative care services alone can adequately support people with COPD. The integration of a multidisciplinary palliative approach within a chronic disease management strategy will be central for the best care for people living with advanced COPD.