Death and the oldest old: Attitudes and preferences for end-of-life care - Qualitative research within a population-based cohort study

PLoS ONE

Volumn 11, Issue 4, 2016, Pages

  Fleming, Jane ^a,b   Farquhar, Morag ^b   Brayne, Carol ^a,b   Barclay, Stephen ^a,b   Buck, Jackie ^c   Dening, Tom ^c   Hunter, Sally ^c   Mukaetova Ladinska, Elizabeta ^c   O'Sullivan, Angela ^c   Paykel, Eugene ^c   Romero Ortuno, Roman ^c   Zhao, Jun Emily ^c  

^a UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^b UNIVERSITY OF CAMBRIDGE   (United Kingdom)

^c NONE

Author keywords

[No Author keywords available]

Indexed keywords

AGED; ARTICLE; ATTITUDE TO DEATH; COHORT ANALYSIS; DAILY LIFE ACTIVITY; DECISION MAKING; DYING; FEMALE; HEALTH CARE POLICY; HUMAN; MALE; PALLIATIVE THERAPY; POPULATION RESEARCH; QUALITATIVE RESEARCH; QUALITY OF LIFE; SELF REPORT; TERMINAL CARE; VERY ELDERLY; CLINICAL TRIAL; FOLLOW UP; PATIENT PREFERENCE;

AGED, 80 AND OVER; ATTITUDE TO DEATH; FEMALE; FOLLOW-UP STUDIES; HUMANS; MALE; PATIENT PREFERENCE; TERMINAL CARE;

EID: 84962900994     PISSN: None     EISSN: 19326203     Source Type: Journal    
DOI: 10.1371/journal.pone.0150686     Document Type: Article

References (60)

1. Leeson G. Increasing Longevity and the New Demography of Death. International Journal of Population Research 2014;2014 (Article ID 521523, 7 pages).
2. Hallberg IR. Death and dying from old people's point of view. A literature review. Aging Clin Exp Res 2004 Apr; 16(2):87-103. PMID: 15195983
3. Sharp T, Moran E, Kuhn I, Barclay S. Do the elderly have a voice? Advance care planning discussions with frail and older individuals: a systematic literature review and narrative synthesis. Br J Gen Pract 2013 Oct; 63(615):e657-e668. doi: 10.3399/bjgp13X673667 PMID: 24152480
4. Klinkenberg M, Willems DL, Onwuteaka-Philipsen BD, Deeg DJ, van der WG. Preferences in end-oflife care of older persons: after-death interviews with proxy respondents. Soc Sci Med 2004 Dec; 59(12):2467-77. PMID: 15474202
5. Hunt KJ, Shlomo N, Addington-Hall J. End-of-Life Care and Preferences for Place of Death among the Oldest Old: Results of a Population-Based Survey Using VOICES-Short Form. J Palliat Med 2014 Feb; 17(2):176-82. doi: 10.1089/jpm.2013.0385 PMID: 24438096
6. Bravell ME, Malmberg B, Berg S. End-of-life care in the oldest old. Palliative & Supportive Care 2010;8(03):335-44.
7. Evans CJ, Bone A, Morgan M, McCrone P, Gaoi W, Wright J, et al. Optimising palliative care for frail elders in community settings: preferences for care and palliative outcomes in the last months of life. BMJ Supportive & Palliative Care 2014 Mar. 1;4(1):111-2.
8. van Eechoud IJ, Piers RD, Van CS, Grypdonck M, Van Den Noortgate NJ, Deveugele M, et al. Perspectives of family members on planning end-of-life care for terminally ill and frail older people. Journal of Pain & Symptom Management 2014 May; 47(5):876-86.
9. Nahm ES, Resnick B. End-of-life treatment preferences among older adults. Nurs Ethics 2001 Nov; 8(6):533-43. PMID: 16004108
10. Kayser-Jones J. The experience of dying: an ethnographic nursing home study. Gerontologist 2002 Oct; 42 Spec No 3:11-9. PMID: 12415128
11. Chan HY, Pang SM. Quality of life concerns and end-of-life care preferences of aged persons in longterm care facilities. J Clin Nurs 2007 Nov; 16(11):2158-66. PMID: 17419782
12. Mathie E, Goodman C, Crang C, Froggatt K, Iliffe S, Manthorpe J, et al. An uncertain future: the unchanging views of care home residents about living and dying. Palliat Med 2012 Jul; 26(5):734-43. doi: 10.1177/0269216311412233 PMID: 21697261
13. Goodman C, Amador S, Elmore N, Machen I, Mathie E. Preferences and priorities for ongoing and endoflife care: a qualitative study of older people with dementia resident in care homes. Int J Nurs Stud 2013 Dec; 50(12):1639-47. doi: 10.1016/j.ijnurstu.2013.06.008 PMID: 23866093
14. Carrese JA, Mullaney JL, Faden RR, Finucane TE. Planning for death but not serious future illness: qualitative study of housebound elderly patients. BMJ 2002 Jul. 20;325(7356):125. PMID: 12130597
15. Lloyd-Williams M, Kennedy V, Sixsmith A, Sixsmith J. The end of life: a qualitative study of the perceptions of people over the age of 80 on issues surrounding death and dying. J Pain Symptom Manage 2007 Jul; 34(1):60-6. PMID: 17531435
16. Nicholson C, Meyer J, Flatley M, Holman C, Lowton K. Living on the margin: understanding the experience of living and dying with frailty in old age. Soc Sci Med 2012 Oct; 75(8):1426-32. doi: 10.1016/j. socscimed.2012.06.011 PMID: 22800918
17. Gott M, Seymour J, Bellamy G, Clark D, Ahmedzai S. Older people's views about home as a place of care at the end of life. Palliat Med 2004 Jul; 18(5):460-7. PMID: 15332424
18. van Wijngaarden E, Leget C, Goossensen A. Ready to give up on life: The lived experience of elderly people who feel life is completed and no longer worth living. Social Science & Medicine 2015 Aug; 138:257-64.
19. Rao R, Dening T, Brayne C, Huppert FA. Attitudes toward death: a community study of octoagenarians and nonagenarians. Int Psychogeriatr 1997 Jun; 9(2):213-21. PMID: 9309493
20. Fleming J, Zhao E, O'Connor DW, Pollitt PA, Brayne C, CC75C study collaboration. Cohort Profile: The Cambridge City over-75s Cohort (CC75C). Int J Epidemiol 2007 Feb. 1;36(1):40-6. PMID: 17510074
21. Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess R, editors. Analyzing qualitative data. London: Routledge; 1994. p. 173-94.
22. Engelberg RA, Patrick DL, Curtis JR. Correspondence between patients' preferences and surrogates' understandings for dying and death. J Pain Symptom Manage 2005 Dec; 30(6):498-509. PMID: 16376736
23. Downey L, Au DH, Curtis JR, Engelberg RA. Life-sustaining treatment preferences: matches and mismatches between patients' preferences and clinicians' perceptions. Journal of Pain & Symptom Management 2013 Jul; 46(1):9-19.
24. Dening KH, Jones L, Sampson EL. Preferences for end-of-life care: A nominal group study of people with dementia and their family carers. Palliative Medicine 2013;27(5):409-17. doi: 10.1177/0269216312464094 PMID: 23128905
25. Clarke A, Seymour J. "At the foot of a very long ladder": discussing the end of life with older people and informal caregivers. J Pain Symptom Manage 2010 Dec; 40(6):857-69. doi: 10.1016/j.jpainsymman. 2010.02.027 PMID: 20813494
26. Seymour J, Witherspoon R, Gott M, Ross H, Payne S, Owen T. End-of-life care. Promoting comfort, choice and well-being for older people. Bristol: The Policy Press in association with Help the Aged; 2005.
27. Dickinson C, Bamford C, Exley C, Emmett C, Hughes J, Robinson L. Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning. Int Psychogeriatr 2013 Dec; 25(12):2011-21. doi: 10.1017/S1041610213001531 PMID: 24053783
28. Janssen DJA, Spruit MA, Schols JMGA, Wouters EFM. Dynamic Preferences for Site of Death Among Patients With Advanced Chronic Obstructive Pulmonary Disease, Chronic Heart Failure, or Chronic Renal Failure. Journal of Pain and Symptom Management 2013 Dec; 46(6):826-36. doi: 10.1016/j. jpainsymman. 2013.01.007 PMID: 23571204
29. Ditto PH, Smucker WD, Danks JH, Jacobson JA, Houts RM, Fagerlin A, et al. Stability of older adults' preferences for life-sustaining medical treatment. Health Psychol 2003 Nov; 22(6):605-15. PMID: 14640858
30. Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. London: DH; 2008.
31. NHS England. Actions for End of Life Care: 2014-2016. 2014.
32. National Palliative and End of Life Care Partnership. Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020. London: National Palliative and End of Life Care Partnership; 2015.
33. Barclay S, Case-Upton S. Knowing patients' preferences for place of death: how possible or desirable? British Journal of General Practice 2009 Sep. 1;59:642-3. doi: 10.3399/bjgp09X454052 PMID: 19761664
34. Piers RD, van Eechoud IJ, Van CS, Grypdonck M, Deveugele M, Verbeke NC, et al. Advance Care Planning in terminally ill and frail older persons. Patient Education & Counseling 2013 Mar; 90(3):323-9.
35. Garavan R, McGee HM, Winder R, O'Neill D. When and how older people discuss preferences for longterm care options. Journal of the American Geriatrics Society 2009 Apr. 1;57(4):750-1. doi: 10.1111/j. 1532-5415.2009.02197.x PMID: 19392974
36. Bruce-Jones P, Roberts H, Bowker L, Cooney V. Resuscitating the elderly: what do the patients want? J Med Ethics 1996 Jun; 22(3):154-9. PMID: 8798937
37. Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making 2006 Jul; 26(4):313-22. PMID: 16855121
38. Barclay S, Froggatt K, Crang C, Mathie E, Handley M, Iliffe S, et al. Living in uncertain times: trajectories to death in residential care homes. British Journal of General Practice 2014 Sep. 1;64(626):e576-e583. doi: 10.3399/bjgp14X681397 PMID: 25179072
39. Seymour J, Gott M, Bellamy G, Ahmedzai SH, Clark D. Planning for the end of life: the views of older people about advance care statements. Soc Sci Med 2004 Jul; 59(1):57-68. PMID: 15087143
40. Caswell G, Pollock K, Harwood R, Porock D. Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC Palliative Care 2015;14(1):35.
41. Gott M, Ingleton C, Gardiner C, Richards N, Cobb M, Ryan A, et al. Transitions to palliative care for older people in acute hospitals: a mixed-methods study. Health Serv Deliv Res 2013;1(11).
42. Oliver D, Foot C, Humphries R. Making our health and care systems fit for an ageing population. London: The King's Fund; 2014.
43. Abba K, Byrne P, Horton S, Lloyd-Williams M. Interventions to encourage discussion of end-of-life preferences between members of the general population and the people closest to them-a systematic literature review. BMC Palliative Care 2013;12(1):40. doi: 10.1186/1472-684X-12-40 PMID: 24188214
44. Ditto PH, Danks JH, Smucker WD, Bookwala J, Coppola KM, Dresser R, et al. Advance directives as acts of communication: a randomized controlled trial. Arch Intern Med 2001 Feb. 12;161(3):421-30. PMID: 11176768
45. Pasman HR, Kaspers PJ, Deeg DJ, Onwuteaka-Philipsen BD. Preferences and actual treatment of older adults at the end of life. A mortality follow-back study. J Am Geriatr Soc 2013 Oct; 61(10):1722-9. doi: 10.1111/jgs.12450 PMID: 24117287
46. Towsley GL, Hirschman KB, Madden C. Conversations about End of Life: Perspectives of Nursing Home Residents, Family, and Staff. Journal of Palliative Medicine 2015;18(5).
47. Fleming J, Zhao J, Farquhar M, Brayne C, Barclay S. Place of death for the 'oldest old': > = 85-yearolds in the CC75C population-based cohort. Br J Gen Pract 2010 Apr; 60(573):171-9. doi: 10.3399/bjgp10X483959 PMID: 20353663
48. Perrels AJ, Fleming J, Zhao J, Barclay S, Farquhar M, Buiting HM, et al. Place of death and end-of-life transitions experienced by very old people with differing cognitive status: retrospective analysis of a prospective population-based cohort aged 85 and over. Palliat Med 2014 Mar; 28(3):220-33. doi: 10. 1177/0269216313510341 PMID: 24317193
49. Gott M, Ingleton C, Bennett MI, Gardiner C. Transitions to palliative care in acute hospitals in England: qualitative study. BMJ 2011 Mar. 29; 342.
50. Aaltonen M, Raitanen J, Forma L, Pulkki J, Rissanen P, Jylhä M. Burdensome Transitions at the End of Life Among Long-Term Care Residents With Dementia. Journal of the American Medical Directors Association 2014 Sep; 15(9):643-8. doi: 10.1016/j.jamda.2014.04.018 PMID: 24913211
51. Ellins J, Glasby J, Tanner D, McIver S, Davidson D, Littlechild R, et al. Understanding and improving transitions of older people: a user and carer centred approach-Full report. National Institute of Health Research Health Service and Delivery Research; 2012.
52. Hanratty B, Holmes L, Lowson E, Grande G, Addington-Hall J, Payne S, et al. Older adults' experiences of transitions between care settings at the end of life in England: a qualitative interview study. J Pain Symptom Manage 2012 Jul; 44(1):74-83. doi: 10.1016/j.jpainsymman. 2011.08.006 PMID: 22658251
53. Davidson S, Gentry T. End of Life Evidence Review. London: Age UK; 2013.
54. World Health Organisation, Davies E, Higginson I. Better Palliative Care for Older People. Copenhagen: WHO Europe; 2004.
55. Mezey M, Dubler NN, Mitty E, Brody AA. What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process? Gerontologist 2002 Oct; 42 Spec No 3:54-67. PMID: 12415134
56. Morris ZS, Fyfe M, Momen N, Hoare S, Barclay S. Understanding hospital admissions close to the end of life (ACE) study. BMC Health Services Research 2013;13:89. doi: 10.1186/1472-6963-13-89 PMID: 23497301
57. Barclay S, Arthur A. Place of death-how much does it matter? The priority is to improve end-of-life care in all settings. British Journal of General Practice 2008;58(549):229-31. PMID: 18387225
58. Seymour JE, Kumar A, Froggatt K. Do nursing homes for older people have the support they need to provide end-of-life care? A mixed methods enquiry in England. Palliat Med 2011 Mar; 25(2):125-38. doi: 10.1177/0269216310387964 PMID: 21282349
59. Lakasing E, Kulkarni S, Sparkes C, Ravi Chander R. A practice-based survey of patients dying in hospital: can we do more to support end-of-life care at home? British Journal of Community Nursing 2014 Mar. 2;19(3):130-3. PMID: 24897834
60. Murtagh F, Bausewein C, Petkova H, Sleeman K, Dodd R, Gysels M, et al. Understanding place of death for patients with non malignant conditions: a systematic literature review. Final report. NIHR Service Delivery and Organisation programme; 2012.