title: Palliative care or end-of-life care in advanced chronic obstructive pulmonary disease: a prospective community survey.
abstract: BACKGROUND
  Calls for better end-of-life care for advanced chronic obstructive pulmonary disease (COPD) reflect the large number who die from the disease and their considerable unmet needs.
  
  
  OBJECTIVE
  To determine palliative care needs in advanced COPD.
  
  
  METHODS
  Cross-sectional interview study in patients' homes using structured questionnaires generated from 44 south London general practices.
  
  
  METHODS
  One hundred and sixty-three (61% response) patients were interviewed, mean age 72 years, 50% female, with diagnosis of COPD and at least two of: forced expiratory volume in the first second (FEV(1)) <40% predicted, hospital admissions or acute severe exacerbations with COPD, long-term oxygen therapy, cor pulmonale, use of oral steroids, and being housebound. Patients with advanced cancer, severe alcohol-related or mental health problems, or learning difficulties, were excluded; 145 patients were included in the analysis.
  
  
  RESULTS
  One hundred and twenty-eight (88%) participants reported shortness of breath most days/every day, 45% were housebound, 75% had a carer. Medical records indicated that participants were at least as severe as non-participants. Eighty-two (57%) had severe breathlessness; 134 (92%) said breathlessness was their most important problem; 31 (21%) were on suboptimal treatment; 42 (30%) who were severely affected had not been admitted to hospital in the previous 2 years; 86 of 102 who had been admitted would want admission again if unwell to the same extent. None expressed existential concerns and few discussed need in terms of end-of-life care, despite severe breathlessness and impairment.
  
  
  CONCLUSIONS
  Needs in advanced COPD were considerable, with many reporting severe intractable breathlessness. Palliation of breathlessness was a priority, but discussion of need was seldom in terms of 'end-of-life care'.
authors.affiliation: Department of General Practice and Primary Care, King's College London, UK. patrick.white@kcl.ac.uk
authors.forename: Patrick
authors.initials: P
authors.lastname: White
authors.forename: Suzanne
authors.initials: S
authors.lastname: White
authors.forename: Polly
authors.initials: P
authors.lastname: Edmonds
authors.forename: Marjolein
authors.initials: M
authors.lastname: Gysels
authors.forename: John
authors.initials: J
authors.lastname: Moxham
authors.forename: Paul
authors.initials: P
authors.lastname: Seed
authors.forename: Cathy
authors.initials: C
authors.lastname: Shipman
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000209:etiology; D003430:Cross-Sectional Studies; D004417:Dyspnea / Q000209:etiology / Q000628:therapy; D005194:Family Practice / Q000592:standards; D005260:Female; D006801:Humans; D008131:London; D008297:Male; D020380:Needs Assessment; D010166:Palliative Care / Q000592:standards*; D010347:Patient Care Planning; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D011446:Prospective Studies; D029424:Pulmonary Disease, Chronic Obstructive / Q000150:complications / Q000628:therapy*; D019141:Respiratory System Agents / Q000627:therapeutic use; D013727:Terminal Care / Q000592:standards*
chemical_list: D019141:Respiratory System Agents