title: Negotiating hope with chronic obstructive pulmonary disease patients: a qualitative study of patients and healthcare professionals.
abstract: BACKGROUND
  The information needs of patients with chronic obstructive pulmonary disease (COPD) towards the end of life are poorly understood.
  
  
  OBJECTIVE
  This study explored the views of patients with COPD and healthcare professionals, focusing upon information needs and treatment preferences.
  
  
  METHODS
  In-depth, semi-structured interviews were held with patients with COPD following admission to hospital with respiratory failure, and focus groups held with healthcare professionals from hospital and community settings.
  
  
  RESULTS
  Ten patients were interviewed, who had a median 4 previous hospital admissions, and had smoked for median 47 years. Five focus groups were held with 31 healthcare professionals (18 nurses, 7 doctors, 6 allied health). The theme underpinning all discussions was of tension between maintaining hope and negotiating the reality of the illness and its consequences. Within this theme, patients tended to be optimistic, viewed acute exacerbations as separate from their underlying chronic illness, and were keen for intensive treatments, including intubation if acutely unwell. They had little understanding of the complexities of decision-making around treatment escalation. Both patients and health workers believed that information around end of life should be offered routinely, but delivered in a manner that recognises and maintains a form of hope.
  
  
  CONCLUSIONS
  Patients and healthcare professionals believe information around illness course, future goals and treatment is important to care. An expanded view of hope may assist when providing such information, including when discussing goals of care in the setting of advanced illness.
authors.affiliation: Centre for Palliative Care, St Vincent's Hospital, Fitzroy, Victoria, Australia. jennifer.philip@svhm.org.au
authors.forename: J
authors.initials: J
authors.lastname: Philip
authors.forename: M
authors.initials: M
authors.lastname: Gold
authors.forename: C
authors.initials: C
authors.lastname: Brand
authors.forename: J
authors.initials: J
authors.lastname: Douglass
authors.forename: B
authors.initials: B
authors.lastname: Miller
authors.forename: V
authors.initials: V
authors.lastname: Sundararajan
mesh_terms: D000368:Aged; D005260:Female; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D017008:Negotiating / Q000379:methods / Q000523:psychology*; D010353:Patient Education as Topic / Q000379:methods; D011368:Professional-Family Relations; D029424:Pulmonary Disease, Chronic Obstructive / Q000523:psychology* / Q000628:therapy*