title: The healthcare needs of chronic obstructive pulmonary disease patients in the last year of life.
abstract: Chronic obstructive pulmonary disease (COPD) causes almost as many deaths as lung cancer, yet evidence about the impact of COPD in the latter stages of illness is limited. We assessed the healthcare needs of COPD patients in the last year of life through a retrospective survey of the informants of 399 deaths from COPD in four London health authorities between January and May 2001. We assessed symptoms, day to day functioning, contact with health and social services, formal and informal help with personal care, information received and place of death. We obtained data on 209 (52%) deceased subjects (55% male), average age at death was 76.8 years. Based on the reports of informants of the deaths: 98% were breathless all the time or sometimes in the last year of life; other symptoms reported all the time or sometimes included fatigue or weakness (96%), low mood (77%) and pain (70%); breathlessness was partly relieved in over 50% of those treated; control of other symptoms was poor, with low mood relieved in 8% and no treatment for low mood received by 82% of sufferers; 41% left the house less than once a month or never; 47% were admitted to hospital at least twice in the last year of life; 51% received regular check-ups for their chest; 36% had check-ups by a hospital consultant; 35% saw their general practitioner (GP) less than once every three months or never; 63% knew they might die; 67% died in hospital. Patients who died from COPD lacked surveillance and received inadequate services from primary and secondary care in the year before they died. The absence of palliative care services highlights the need for research into appropriate models of care to address uncontrolled symptoms, information provision and end of life planning
authors.affiliation: Department of General Practice and Primary Care, King's College London, London, UK.
authors.forename: Helena
authors.initials: H
authors.lastname: Elkington
authors.forename: Patrick
authors.initials: P
authors.lastname: White
authors.forename: Julia
authors.initials: J
authors.lastname: Addington-Hall
authors.forename: Roger
authors.initials: R
authors.lastname: Higgs
authors.forename: Polly
authors.initials: P
authors.lastname: Edmonds
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006699:Home Care Services / Q000592:standards / Q000706:statistics & numerical data; D006801:Humans; D008131:London; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D017060:Patient Satisfaction; D029424:Pulmonary Disease, Chronic Obstructive / Q000628:therapy*; D011787:Quality of Health Care; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000592:standards / Q000706:statistics & numerical data*