Living in uncertain times: Trajectories to death in residential care homes

British Journal of General Practice

Volumn 64, Issue 626, 2014, Pages e576-e583

  Barclay, Stephen ^a   Froggatt, Katherine ^b   Crang, Clare ^a   Mathie, Elspeth ^c   Handley, Melanie ^c   Iliffe, Steve ^d   Manthorpe, Jill ^e   Gage, Heather ^f   Goodman, Claire ^c  

^a UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^b LANCASTER UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF HERTFORDSHIRE   (United Kingdom)

^d UNIVERSITY COLLEGE LONDON   (United Kingdom)

^e KING'S COLLEGE LONDON   (United Kingdom)

^f UNIVERSITY OF SURREY   (United Kingdom)

Author keywords

Care homes; Dying trajectories; End of life care; Palliative care; Primary health care

Indexed keywords

ARTICLE; DEATH; DYING; FOLLOW UP; HOME CARE; HOSPITAL ADMISSION; HUMAN; ILLNESS TRAJECTORY; NURSING STAFF; PATIENT CARE; PROSPECTIVE STUDY; RESIDENTIAL CARE; TERMINAL CARE; TRAJECTORY TO DEATH; AGED; CLINICAL TRIAL; EPIDEMIOLOGY; FRAIL ELDERLY; HEALTH PERSONNEL ATTITUDE; HEALTH SERVICES RESEARCH; HOME FOR THE AGED; HOSPITALIZATION; HUMAN RELATION; MANAGEMENT; MULTICENTER STUDY; NURSING HOME; ORGANIZATION AND MANAGEMENT; PRIMARY HEALTH CARE; QUALITATIVE RESEARCH; UNITED KINGDOM; VERY ELDERLY;

ADVANCE CARE PLANNING; AGED; AGED, 80 AND OVER; ATTITUDE OF HEALTH PERSONNEL; ENGLAND; FRAIL ELDERLY; HEALTH SERVICES RESEARCH; HOMES FOR THE AGED; HOSPITALIZATION; HUMANS; NURSING HOMES; POLICY MAKING; PRIMARY HEALTH CARE; PROFESSIONAL-PATIENT RELATIONS; PROSPECTIVE STUDIES; QUALITATIVE RESEARCH; TERMINAL CARE;

EID: 84907015262     PISSN: 09601643     EISSN: 14785242     Source Type: Journal    
DOI: 10.3399/bjgp14X681397     Document Type: Article

References (39)

1. Laing Buisson.Care of Elderly People UK 2012/13 -Key facts: https://www.laingbuisson.co.uk/MediaCentre/PressReleases/CareofElderly201213PressRelease.aspx (accessed 5 Aug 2014).
2. Office for National Statistics. Mortality Statistics 2012. London: ONS 2013.
3. National Audit Office. End of Life Care. London: The Stationery Office, 2008.
4. Goodman C, Evans C, Wilcock J, et al. End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry 2010; 25(4): 329-337.
5. Fleming J, Zhao J, Farquhar M, et al. Place of death for the 'oldest old': =85-year-olds in the CC75C population-based cohort. Br J Gen Pract 2010; 60(573): 171-179.
6. Froggatt K, Davies S, Meyer J, eds. Understanding care homes: a research and development perspective. London: Jessica Kingsley Publishers, 2009.
7. Department of Health. End of life care strategy. Promoting high quality care for all adults at the end of life. London: DoH, 2008.
8. Social Care Advisory Group of the National End of life care Programme. Supporting people to live and die well: a framework for social care at the end of life. London: National End-of-life care Programme, 2010.
9. Thomas K. Caring for the dying at home. Abingdon: Radcliffe Publishing, 2003.
10. Thomas K. The Gold Standards Framework in community palliative care. Eur J Palliat Care 2003; 10(3): 113-115.
11. Ellershaw J, Foster A, Murphy D, et al. Developing an integrated care pathway for the dying patient. Eur J Palliat Care 1997; 4(6): 203-207.
12. Ellershaw J, Wilkinson S. Care of the dying: a pathway to excellence. Oxford: Oxford University Press, 2003.
13. Storey L, Pemberton C, Howard A, O'Donnell L. Place of death: Hobson's Choice or patient choice? Cancer Nurs Pract 2003; 2(4): 33-38.
14. NHS End-of-life care Programme. Advance care planning: a guide for health and social care staff. London: Department of Health, 2008.
15. National Institute for Health and Care Excellence. Quality, Innovation, Productivity and Prevention (QIPP). Quality assured examples of improvements in quality and productivity across the NHS and social care. https://www.evidence. nhs.uk/qipp (accessed 16 Jul 2014).
16. NHS Scotland. Living and dying well: a national action plan for palliative and end of life care in Scotland. Edinburgh: The Scottish Government, 2008. http://www. scotland.gov.uk/Resource/Doc/239823/0066155.pdf (accessed 16 Jul 2014).
17. Barclay S, Arthur A. Place of death: how much does it matter? The priority is to improve end-of-life care in all settings. Br J Gen Pract 2007; DOI: 10.3399/bjgp08X279724.
18. Parkes CM. Home or hospital? Terminal care as seen by surviving spouses. J R Coll Gen Pract 1978; 28: 19-30.
19. Knights D, Wood D, Barclay S. The Liverpool Care Pathway for the dying: what went wrong? Br J Gen Pract 2013; DOI: 10.3399/bjgp13X673559.
20. Leadership Alliance for the Care of Dying People. Once chance to get it right. Improving people's experience of care in the last few days and hours of life. https://www.gov.uk/government/uploads/system/uploads/attachment-data/file/323188/One-chance-to-get-it-right.pdf (accessed 5 Aug 2014).
21. Lunney JR, Lynn J, Foley DJ, et al. Patterns of functional decline at the end of life. JAMA 2003; 289(18): 2387-2392.
22. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005; 330: 1007-1011.
23. Omega: the National Association for End of life care. End of life care in primary care: 2009 national snapshot. http://www.goldstandardsframework.org.uk/cd-content/uploads/files/Library,%20Tools%20%26%20resources/EOLC%20 in%20Primary%20Care%20national%20snapshot%20-%20Key%20Findings.pdf (accessed 16 Jul 2014).
24. Nicholson C, Meyer J, Flatley M, et al. Living on the margin: understanding the experience of living and dying with frailty in old age. Soc Sci Med 2012; 75(8): 1426-1432.
25. Mathie E, Goodman C, Crang C, et al. An uncertain future: the unchanging views of care home residents about living and dying. Palliat Med 2012; 26(5): 734-743.
26. Goodman C, Mathie E, Cowe M, et al. Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes. BMC Palliat Care 2011; 10(20).
27. Momen N, Kendall M, Barclay S, Murray S. Using timelines to depict patient journeys: a development for research methods and clinical care review. Prim Health Care Res Dev 2013; 14(4): 403-408.
28. Ritchie J, Spencer L, O'Connor W. Carrying out qualitative analysis. In: Ritchie J, Lewis J, eds. Qualitative research practice: a guide for social science students and researchers. London: Sage, 2003: 219-262.
29. Murray SA, Kendal M, Grant E, et al. Patterns of social, psychological, and spiritual decline toward the end of life in lung cancer and heart failure. J Pain Symptom Manage 2007; 34(4): 393-402.
30. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end-of-life care in elderly patients: randomised controlled trial. BMJ 2010; 340: c1345.
31. Davison SN, Simpson C. Hope and advance care planning in patients with end stage renal disease: qualitative interview study. BMJ 2006; 333(7574): 886.
32. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300(14): 1665-1673.
33. Abel J, Pring A, Rich A, et al. The impact of advance care planning of place of death, a hospice retrospective cohort study. BMJ Support Palliat Care 2013; 3(2): 168-173.
34. Meeussen K, Van den Block L, Bossuyt N, et al. GPs' awareness of patients' preference for place of death. Br J Gen Pract 2009; DOI: 10.3399/bjgp09X454124.
35. Badger F, Clifford C, Hewison A, Thomas K. An evaluation of the implementation of a programme to improve end-of-life care in nursing homes. Palliat Med 2009; 23(6): 502-511.
36. Barclay S, Case-Upton S. Knowing patients' preferences for place of death: how possible or desirable? Br J Gen Pract 2009; DOI: 10.3399/bjgp09X454052.
37. Cosgriff J, Pisani M, Bradley EH, et al. The association between treatment preferences and trajectories of care at the end-of-life. J Gen Intern Med 2007; 22(11): 1566-1571.
38. Schiff R, Sacares P, Snook J, et al. Living wills and the Mental Capacity Act: a postal questionnaire survey of UK geriatricians. Age Ageing 2006; 35: 116-121.
39. Bern-Klug M. A framework for categorizing social interactions related to end-oflife care in nursing homes. Gerontologist 2009; 49(4): 495-507.