title: Unmet needs of people with end-stage chronic obstructive pulmonary disease: recommendations for change in Australia.
abstract: 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.
  
  
  OBJECTIVE
  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.
authors.affiliation: Discipline of Medicine, University of Adelaide, Adelaide, South Australia, Australia. gregory.crawford@adelaide.edu.au
authors.forename: G B
authors.initials: GB
authors.lastname: Crawford
authors.forename: M A
authors.initials: MA
authors.lastname: Brooksbank
authors.forename: M
authors.initials: M
authors.lastname: Brown
authors.forename: T A
authors.initials: TA
authors.lastname: Burgess
authors.forename: M
authors.initials: M
authors.lastname: Young
mesh_terms: D000368:Aged; D001315:Australia / Q000453:epidemiology; D017028:Caregivers / Q000592:standards*; D005260:Female; D017144:Focus Groups / Q000379:methods / Q000592:standards*; D006287:Health Planning Guidelines; D006301:Health Services Needs and Demand / Q000592:standards*; D006801:Humans; D008297:Male; D008875:Middle Aged; D029424:Pulmonary Disease, Chronic Obstructive / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy*