title: Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study.
abstract: OBJECTIVE
  To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD.
  
  
  METHODS
  Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives.
  
  
  METHODS
  21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients.
  
  
  METHODS
  Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.
  
  
  RESULTS
  Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a "way of life" rather than an "illness." Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a "chaos narrative" of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population.
  
  
  CONCLUSIONS
  Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.
authors.affiliation: Allergy and Respiratory Research Group, Centre for Population Health Sciences: GP Section, University of Edinburgh, Edinburgh, UK.
authors.forename: Hilary
authors.initials: H
authors.lastname: Pinnock
authors.forename: Marilyn
authors.initials: M
authors.lastname: Kendall
authors.forename: Scott A
authors.initials: SA
authors.lastname: Murray
authors.forename: Allison
authors.initials: A
authors.lastname: Worth
authors.forename: Pamela
authors.initials: P
authors.lastname: Levack
authors.forename: Mike
authors.initials: M
authors.lastname: Porter
authors.forename: William
authors.initials: W
authors.lastname: MacNee
authors.forename: Aziz
authors.initials: A
authors.lastname: Sheikh