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Background: Current models of care for people with advanced chronic obstructive pulmonary disease (COPD) have been demonstrated to be inadequate, particularly in areas such as advance care planning, symptom control and psychosocial and spiritual care. Aim: This paper aims to explore how a model of patient-centred care can incorporate a palliative approach to form a practical and useful framework for care that meets the needs of people with advanced COPD. Discussion: There is increasing recognition of the need to provide active disease management at the same time as supportive care for people with chronic disease. A palliative approach can incorporate these two care imperatives but a number of barriers often make implementation problematic. A patient-centred care approach can help to address these barriers and is increasingly being seen as an appropriate framework for all healthcare service provision. Significant changes are required to health systems and service provision for this model of care to be implemented; specialist palliative care services can take a leading role in change management. Conclusion: Patient-centred care provides an appropriate framework for the development of a model of care for advanced COPD. It allows for a need-based approach to service provision, rather than the current prognosis-based system and brings patient and carer needs and concerns to the forefront of care. Refereed/Peer-reviewed

Objective To explore service availability and accessibility for people with advanced chronic obstructive pulmonary disease (COPD) and their carers and strategies for improvement, including the potential role of a COPD care co-ordinator in ensuring best-practice care in the Australian context. Methods This qualitative study used focus groups and interviews with health professionals, carers and consumers to explore gaps and restrictions in services, barriers to access and the functioning of services. Data were analysed deductively. Results Key themes arising from the data included difficulties around access to care, lack of continuity of care, poor care co-ordination, the need for active disease management as well as supportive care, and poor communication. A COPD care co-ordinator was suggested as an effective strategy for ensuring best-practice care. Conclusions People with advanced COPD often have difficulty navigating the acute, primary and community care systems to deal with the multiple services that they may require. Lack of communication between health professionals and services is frequently a significant issue. A COPD care co-ordinator, encompassing advanced nursing skills, could ensure that care is centred on the needs of the person and their carer and that they receive continuing, appropriate and accessible care as they approach the end of their life. What is known about the topic? The importance of care co-ordination as a quality care indicator in chronic disease is growing, and the care co-ordinator role as a facilitator of quality care is increasingly being recognised in the UK and US. There is currently little information in the Australian context about how a COPD care co-ordinator role could be implemented, where it could be situated and the level of skill required. What does this paper add? This paper explores the specific issues in developing a COPD care co-ordinator role and provides a detailed model of care for the introduction of care co-ordinators into the Australian setting. What are the implications for practitioners? The proposed COPD care co-ordinator role has the potential to improve quality, continuing care for people with advanced COPD. It could facilitate the linkage of multidisciplinary teams across acute, primary and community care settings and promote timely and effective communication. The role would provide a clear point of contact for all practitioners and the opportunity for nurses to develop an advanced practice role in COPD care co-ordination, combining a palliative care approach with a chronic disease management framework.

This project has demonstrated that neither respiratory nor palliative care services alone can adequately support people with COPD. There is little doubt that a new model of care for people with advanced COPD is required in Australia. The findings of this project reflect both the international evidence and the Australian context and demonstrate clearly that the health care system must change for best practice care to be provided for people with advanced COPD and for their carers and families.There is a need for a model of care that assists these people to navigate the health care and community support systems, that is patient-centred and reflects a palliative approach and which is co-ordinated across the primary, acute and community sectors. The integration of a multidisciplinary palliative approach within a chronic disease management strategy, as well as the recognition thatDeveloping a model of care for people with end stage COPD and their carers, 2011 119active disease management and palliation are complimentary, not mutually exclusive, will be central for the best care for people living with advanced COPD.