title: The views of patients with severe chronic obstructive pulmonary disease on advance care planning: a qualitative study.
abstract: BACKGROUND
  Chronic obstructive pulmonary disease (COPD) is a major cause of death worldwide and there are concerns that end-of-life care for these patients is inadequate. Advance care planning is encouraged, with the hope that it will improve communication and avoid unwanted interventions, which have been particular concerns; in practice, these discussions rarely occur. We have little knowledge of the views of patients with COPD on advance care planning. Understanding this could help integrate advance care planning into the routine management of patients with COPD.
  
  
  OBJECTIVE
  To explore the views of people with severe COPD about advance care planning.
  
  
  METHODS
  Qualitative design, with data collection incorporating audio recorded semi-structured interviews. Analysis followed a grounded theory approach.
  
  
  METHODS
  Patients with severe COPD (n =10, Gold Standards Framework criteria) were recruited from primary and secondary care settings.
  
  
  RESULTS
  Participants felt they had not been given enough information about their diagnosis and prognosis, and were keen for more discussion with healthcare professionals. They wanted more involvement in decisions about their treatment when those decisions were required. Participants were happy to discuss their general views about future care, but felt uncomfortable with the traditional model of binding 'advance directives'.
  
  
  CONCLUSIONS
  Considering advance care planning as a repeated process of discussion of prognosis, concerns and probable preferences for care would be more useful than encouraging binding advance decisions. Further research should assess the effectiveness of this approach. Local coordination of who is responsible for information provision is needed, and greater involvement of patients with COPD in management decisions as they arise.
authors.affiliation: North Western Deanery, UK. anna_macpherson@hotmail.com
authors.forename: Anna
authors.initials: A
authors.lastname: MacPherson
authors.forename: Catherine
authors.initials: C
authors.lastname: Walshe
authors.forename: Valerie
authors.initials: V
authors.lastname: O'Donnell
authors.forename: Aashish
authors.initials: A
authors.lastname: Vyas
mesh_terms: D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D029424:Pulmonary Disease, Chronic Obstructive / Q000628:therapy*; D036301:Qualitative Research; D011795:Surveys and Questionnaires