title: Living in uncertain times: trajectories to death in residential care homes.
abstract: BACKGROUND
  Older people living in care homes often have limited life expectancy. Practitioners and policymakers are increasingly questioning the appropriateness of many acute hospital admissions and the quality of end-of-life care provided in care homes.
  
  
  OBJECTIVE
  To describe care home residents' trajectories to death and care provision in their final weeks of life.
  
  
  METHODS
  Prospective study of residents in six residential care homes in three sociodemographically varied English localities: Hertfordshire, Essex, and Cambridgeshire.
  
  
  METHODS
  Case note reviews and interviews with residents, care home staff, and healthcare professionals.
  
  
  RESULTS
  Twenty-three out of 121 recruited residents died during the study period. Four trajectories to death were identified: 'anticipated dying' with an identifiable end-of-life care period and death in the care home (n = 9); 'unexpected dying' with death in the care home that was not anticipated and often sudden (n = 3); 'uncertain dying' with a period of diagnostic uncertainty or difficult symptom management leading to hospital admission and inpatient death (n = 7); and 'unpredictable dying' with an unexpected event leading to hospital admission and inpatient death (n = 4). End-of-life care tools were rarely used. Most residents who had had one or more acute hospital admission were still alive at the end of the study.
  
  
  CONCLUSIONS
  For some care home residents there was an identifiable period when they were approaching the end-of-life and planned care was put in place. For others, death came unexpectedly or during a period of considerable uncertainty, with care largely unplanned and reactive to events.
authors.affiliation: Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge.
authors.forename: Stephen
authors.initials: S
authors.lastname: Barclay
authors.affiliation: International Observatory on End of Life Care, Faculty of Health and Medicine, Lancaster University, Lancaster.
authors.forename: Katherine
authors.initials: K
authors.lastname: Froggatt
authors.affiliation: Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge.
authors.forename: Clare
authors.initials: C
authors.lastname: Crang
authors.affiliation: Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield.
authors.forename: Elspeth
authors.initials: E
authors.lastname: Mathie
authors.affiliation: Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield.
authors.forename: Melanie
authors.initials: M
authors.lastname: Handley
authors.affiliation: Department of Primary Care and Population Health, University College London, London.
authors.forename: Steve
authors.initials: S
authors.lastname: Iliffe
authors.affiliation: Social Care Workforce Research Unit, King's College London, London.
authors.forename: Jill
authors.initials: J
authors.lastname: Manthorpe
authors.affiliation: Department of Economics, University of Surrey, Guildford.
authors.forename: Heather
authors.initials: H
authors.lastname: Gage
authors.affiliation: Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield.
authors.forename: Claire
authors.initials: C
authors.lastname: Goodman
mesh_terms: D032722:Advance Care Planning / Q000458:organization & administration*; D000368:Aged; D000369:Aged, 80 and over; D001291:Attitude of Health Personnel; D004739:England / Q000453:epidemiology; D016330:Frail Elderly; D006302:Health Services Research; D006707:Homes for the Aged / Q000458:organization & administration*; D006760:Hospitalization; D006801:Humans; D009735:Nursing Homes; D011050:Policy Making; D011320:Primary Health Care; D011369:Professional-Patient Relations; D011446:Prospective Studies; D036301:Qualitative Research; D013727:Terminal Care / Q000458:organization & administration*
keywords: care homes; dying trajectories; end-of-life care; palliative care; primary health care