Living in uncertain times: trajectories to death in residential care homes. Barclay, S., Froggatt, K., Crang, C., Mathie, E., Handley, M., Iliffe, S., Manthorpe, J., Gage, H., & Goodman, C. The British journal of general practice : the journal of the Royal College of General Practitioners, 64(626):e576-83, 9, 2014.
abstract   bibtex   
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. AIM: To describe care home residents' trajectories to death and care provision in their final weeks of life. DESIGN AND SETTING: Prospective study of residents in six residential care homes in three sociodemographically varied English localities: Hertfordshire, Essex, and Cambridgeshire. METHOD: 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. CONCLUSION: 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.
@article{
 title = {Living in uncertain times: trajectories to death in residential care homes},
 type = {article},
 year = {2014},
 identifiers = {[object Object]},
 keywords = {Advance Care Planning/organization & administratio,Aged,Aged, 80 and over,Attitude of Health Personnel,England/epidemiology,Frail Elderly,Health Services Research,Homes for the Aged/organization & administration,Hospitalization,Humans,Nursing Homes,Policy Making,Primary Health Care,Professional-Patient Relations,Prospective Studies,Qualitative Research,Terminal Care/organization & administration,care homes,dying trajectories,end-of-life care,palliative care},
 pages = {e576-83},
 volume = {64},
 month = {9},
 city = {Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge.; International Observatory on End of Life Care, Faculty of Health and Medicine, Lancaster University, Lancaster.; Primary Care Unit, Department of Public },
 id = {5fd4a42e-17f3-3187-820a-582da2218f36},
 created = {2016-08-20T16:52:36.000Z},
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 profile_id = {217ced55-4c79-38dc-838b-4b5ea8df5597},
 group_id = {408d37d9-5f1b-3398-a9f5-5c1a487116d4},
 last_modified = {2017-03-14T09:54:45.334Z},
 read = {false},
 starred = {false},
 authored = {false},
 confirmed = {true},
 hidden = {false},
 source_type = {JOUR},
 notes = {CI: (c) British Journal of General Practice 2014; JID: 9005323; OID: NLM: PMC4141615; OTO: NOTNLM; ppublish},
 folder_uuids = {cbf07968-bdea-492d-b4e4-d50a2e1cb62d},
 private_publication = {false},
 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. AIM: To describe care home residents' trajectories to death and care provision in their final weeks of life. DESIGN AND SETTING: Prospective study of residents in six residential care homes in three sociodemographically varied English localities: Hertfordshire, Essex, and Cambridgeshire. METHOD: 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. CONCLUSION: 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.},
 bibtype = {article},
 author = {Barclay, S and Froggatt, K and Crang, C and Mathie, E and Handley, M and Iliffe, S and Manthorpe, J and Gage, H and Goodman, C},
 journal = {The British journal of general practice : the journal of the Royal College of General Practitioners},
 number = {626}
}
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