Heterogeneity and changes in preferences for dying at home: A systematic review

BMC Palliative Care

Volumn 12, Issue 1, 2013, Pages

  Gomes, Barbara ^a   Calanzani, Natalia ^a   Gysels, Marjolein ^a   Hall, Sue ^a   Higginson, Irene J ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

Hospice care; Hospices; Palliative care; Patient preference; Patient satisfaction; Terminal care

Indexed keywords

CAREGIVER; CINAHL; DEATH; DISEASE COURSE; EMBASE; GEOGRAPHIC DISTRIBUTION; HOME CARE; HOSPICE; HUMAN; MEDLINE; PALLIATIVE THERAPY; PATIENT PREFERENCE; PSYCINFO; QUALITATIVE RESEARCH; QUANTITATIVE ANALYSIS; REVIEW; SYSTEMATIC REVIEW; TERMINAL CARE; TERMINALLY ILL PATIENT;

EID: 84873719806     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/1472-684X-12-7     Document Type: Review

References (76)

1. The hospitalisation of death: should more people die at home? Bowling A, J Med Ethics 1983 9 3 158 161 10.1136/jme.9.3.158 6620320
2. Family perspectives on end-of-life care at the last place of care. Teno JM, Clarridge BR, Casey V, Welch LC, Wetle T, Shield R, Mor V, JAMA 2004 291 1 88 93 10.1001/jama.291.1.88 14709580
3. World Health Organization, Palliative Care for Older People: Best Practices Copenhagen: World Health Organization 2011
4. Projections of global mortality and burden of disease from 2002 to 2030. Mathers CD, Loncar D, PLoS Med 2006 3 11 442 10.1371/journal.pmed.0030442 17132052
5. Office for National Statistics, 2010-based National Population Projections 2011 http://www.ons.gov.uk/ons/rel/npp/national-population- projections/2010-based-projections/index.html
6. Population Division USCB, 2009 National Population Projections 2009 http://www.census.gov/population/projections/
7. World Health Organization, Preventing chronic disease: a vital investment Geneva: World Health Organization 2005
8. Where people die (1974-2030): past trends, future projections and implications for care. Gomes B, Higginson IJ, Palliat Med 2008 22 1 33 41 10.1177/0269216307084606 18216075
9. International trends in circumstances of death and dying amongst older people. Gomes B, Cohen J, Deliens L, Higginson IJ, Living with ageing and dying: palliative care and end of life care for older people Oxford: Oxford University Press, Gott M, Ingleton C, First 2011 3 18
10. Study of recent and future trends in place of death in Belgium using death certificate data: a shift from hospitals to care homes. Houttekier D, Cohen J, Surkyn J, Deliens L, BMC Public Health 2011 11 228 10.1186/1471-2458- 11-228 21489273
11. Medicare and Medicaid Programs: hospice conditions of participation [final rule]. Department of Health Human Services, Fed Regist 2008 73 109 32088 32219
12. Department of Health, End of Life Care Strategy-promoting high quality care for all adults at the end of life London: Department of Health 2008
13. Place of death: U.S. trends since 1980. Flory J, Yinong YX, Gurol I, Levinsky N, Ash A, Emanuel E, Health Aff 2004 23 3 194 200 10.1377/hlthaff.23.3. 194
14. Reversal of the British trends in place of death: time series analysis 2004-2010. Gomes B, Calanzani N, Higginson IJ, Palliat Med 2012 26 2 102 107 10.1177/0269216311432329 22258367
15. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. Higginson IJ, Sen-Gupta GJA, J Palliat Med 2000 3 3 287 300 10.1089/jpm.2000.3.287 15859670
16. Methodological review: measured and reported congruence between preferred and actual place of death. Bell CL, Somogyi-Zalud E, Masaki KH, Palliat Med 2009 23 6 482 490 10.1177/0269216309106318 19494055
17. Terminal cancer care and patients' preference for place of death: a prospective study. Townsend J, Frank AO, Fermont D, Dyer S, Karran O, Walgrove A, Piper M, BMJ 1990 301 6749 415 417 10.1136/bmj.301.6749.415 1967134
18. Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives? Hinton J, Palliat Med 1994 8 3 183 196 10.1177/026921639400800302 7952369
19. Khan KS, Undertaking systematic reviews of research on effectiveness: CRD's guidelines for those carrying out or commissioning reviews York: University of York 2001 Volume 2nd 20923587
20. Appraising the evidence: reviewing disparate data systematically. Hawker S, Payne S, Kerr C, Hardey M, Powell J, Qual Health Res 2002 12 1284 1299 10.1177/1049732302238251 12448672
21. Factors influencing death at home in terminally ill patients with cancer: systematic review. Gomes B, Higginson IJ, BMJ 2006 332 515 521 10.1136/bmj.38740.614954.55 16467346
22. West S, King V, Carey TS, Lohr KN, McKoy N, Sutton SF, Lux L, Systems to Rate the Strength of Scientific Evidence. Evidence Report/Technology Assessment No. 47 (Prepared by the Research Triangle Institute-University of North Carolina Evidence-based Practice Center under Contract No. 290-97-0011). AHRQ Publication No. 02-E016 Rockville, MD: Agency for Healthcare Research and Quality 2002
23. Attitudes to some aspects of death and dying, living wills and substituted health care decision-making in South Australia: public opinion survey for a parliamentary select committee. Ashby M, Wakefield M, Palliat Med 1993 7 4 273 282 8261193
24. Long-term care preferences of hospitalized persons with AIDS. McCormick WC, Inui TS, Deyo RA, Wood RW, J Gen Intern Med 1991 6 6 524 528 10.1007/BF02598221 1765868
25. Factors predictive of preferred place of death in the general population of South Australia. Foreman LM, Hunt RW, Luke CG, Roder DM, Palliat Med 2006 20 4 447 453 10.1191/0269216306pm1149oa 16875116
26. Attitudes of health centre users to diagnoses of terminal illness. Fernández Suárez A, Fernandez AT, Alonso AC, Marcilla EM, Cortina VA, Conde RM, Rubio DJ, Aten Primaria 2002 30 7 449 454 10.1016/S0212-6567(02) 79070-7 12406412
27. [Cancer diagnosis: do we want to know the truth?]. [Spanish]. Rubio Arribas V, Martinez SE, Sarasola ZM, Benito GI, Redin AS, Ibanez TV, Aten Primaria 2004 33 7 368 373 15117631
28. Choosing a place of death: the influence of pain and of attitude toward death. Martineau I, Blondeau D, Godin G, J Appl Soc Psychol 2003 33 9 1973 1993 10.1111/j.1559-1816.2003.tb02089.x
29. End-of-life care preferences of Canadian senior citizens with caregiving experience. Wilson DM, J Adv Nurs 2000 31 6 1416 1421 10.1046/j.1365-2648.2000. 01456.x 10849154
30. Dying peacefully: considering good death and bad death in Kwahu-Tafo, Ghana. van der Geest S, Soc Sci Med 2004 58 5 899 911 10.1016/j.socscimed.2003. 10.041 14732604
31. Older people's views about home as a place of care at the end of life. Gott M, Seymour J, Bellamy G, Clark D, Ahmedzai S, Palliat Med 2004 18 5 460 467 10.1191/0269216304pm889oa 15332424
32. Hospice or home? Expectations of end-of-life care among white and Chinese older people in the UK. Seymour J, Payne S, Chapman A, Holloway M, Sociol Health Illn 2007 29 6 872 890 10.1111/j.1467-9566.2007.01045.x 17986020
33. The end of life: a qualitative study of the perceptions of people over the age of 80 on issues surrounding death and dying. Lloyd-Williams M, Kennedy V, Sixsmith A, Sixsmith J, J Pain Symptom Manage 2007 34 1 60 66 10.1016/j.jpainsymman.2006.09.028 17531435
34. Measuring desire for control of health care processes. Smith RA, Wallston BS, Wallston KA, Forsberg PR, King JE, J Pers Soc Psychol 1984 47 2 415 426 6481619
35. National Hospice and Palliative Care Organisation, Press release: Spread the News: National Hospice and Palliative Care Organization Alexandria: National Hospice and Palliative Care Organization; 1992
36. National Hospice and Palliative Care Organization, Press relase: New Findings Address Escalating End-of-Life Debate Alexandria: National Hospice and Palliative Care Organization 1996
37. «South Dakota's dying to know»: a statewide survey about end of life. Schrader SL, Nelson ML, Eidsness LM, J Palliat Med 2009 12 8 695 705 10.1089/jpm.2009.0056 19591624
38. Racial differences in attitudes toward hospice care. Neubauer BJ, Hamilton CL, Hosp J 1990 6 1 37 48 2379922
39. Dying in hospital of terminal heart failure or severe dementia: the circumstances associated with death and the opinions of caregivers. Formiga F, Olmedo C, Lopez-Soto A, Navarro M, Culla A, Pujol R, Palliat Med 2007 21 1 35 40 10.1177/0269216306073256 17169958
40. Is there no place like home? Caregivers recall reasons for and experience upon transfer from home hospice to inpatient facilities. Evans WG, Cutson TM, Steinhauser KE, Tulsky JA, J Palliat Med 2006 9 1 100 110 10.1089/jpm.2006.9.100 16430350
41. Resident and facility characteristics associated with the site of death among Japanese nursing home residents. Shinoda-Tagawa T, Ikegami N, Age Ageing 2005 34 5 515 518 10.1093/ageing/afi162 16107460
42. Processes of decision making and end-of-life care for patients with dementia in group homes in Japan. Nakanishi M, Honda T, Arch Gerontol Geriatr 2009 48 3 296 299 10.1016/j.archger.2008.02.009 18359112
43. Quality indicators of end-of-life cancer care from the bereaved family members' perspective in Japan. Miyashita M, Morita T, Ichikawa T, Sato K, Shima Y, Uchitomi Y, J Pain Symptom Manage 2009 37 6 1019 1026 10.1016/j.jpainsymman. 2008.05.015 19321296
44. World Health Organization, A Community Health Approach to Palliative Care for HIV/AIDS and Cancer Patients Geneva: World Health Organization 2004
45. Preferences for place of care and place of death among informal caregivers of the terminally ill. Brazil K, Howell D, Bedard M, Krueger P, Heidebrecht C, Palliat Med 2005 19 6 492 499 10.1191/0269216305pm1050oa 16218162
46. Factors influencing preferences for place of terminal care and of death among cancer patients and their families in Korea. Choi KS, Chae YM, Lee CG, Kim SY, Lee SW, Heo DS, Kim JS, Lee KS, Hong YS, Yun YH, Support Care Cancer 2005 13 8 565 572 10.1007/s00520-005-0809-4 15812653
47. Family decision-making in advanced dementia: narrative and ethics. Elliott BA, Gessert CE, Peden-McAlpine C, Scand J Caring Sci 2009 23 2 251 258 10.1111/j.1471-6712.2008.00613.x 19645802
48. Insights on family decision making regarding place of care and death: bereavement interviews with family caregivers. 17th International Congress on Palliative Care, September 23-26, 2008/Palais Des Congres, Montreal, Canada. Thomson C, Brazil K, J Palliat Care 2008 24 3 211 211
49. Good death in Japanese cancer care: a qualitative study. Hirai K, Miyashita M, Morita T, Sanjo M, Uchitomi Y, J Pain Symptom Manage 2006 31 2 140 147 10.1016/j.jpainsymman.2005.06.012 16488347
50. Experiences of surviving spouse of terminally ill spouse: a phenomenological study of an altruistic perspective. Fisker T, Strandmark M, Scand J Caring Sci 2007 21 2 274 281 10.1111/j.1471-6712.2007.00466.x 17559447
51. Family members providing home-based palliative care to older adults: the enactment of multiple roles. Clemmer SJ, Ward-Griffin C, Forbes D, Can J Aging 2008 27 3 267 283 10.3138/cja.27.3.285 19158043
52. Place of death: preferences among cancer patients and their carers. Thomas C, Morris SM, Clark D, Soc Sci Med 2004 58 12 2431 2444 10.1016/j.socscimed.2003.09.005 15081195
53. Patient participation in decision making at the end of life as seen by a close relative. Sahlberg-Blom E, Ternestedt B, Johansson J, Nurs Ethics 2000 7 4 296 313 11221407
54. Construction of health preferences: a comparison of direct value assessment and personal narratives. Kerstholt JH, Bart H, Cremers A, Med Decis Making 2009 29 4 513 520 10.1177/0272989X09331809 19237644
55. Prevalence, effectiveness, and predictors of planning the place of death among older persons followed in community-based long term care. Leff B, Kaffenbarger KP, Remsburg R, J Am Geriatr Soc 2000 48 8 943 948 10968299
56. Preference for place of care and place of death in palliative care: are these different questions? Agar M, Currow DC, Shelby-James TM, Plummer J, Sanderson C, Abernethy AP, Palliat Med 2008 22 7 787 795 10.1177/ 0269216308092287 18755830
57. Recording and auditing preferred place of death. Daley A, Sinclair K, Palliat Med 2006 20 6 637 638 10.1177/0269216306070279 17060258
58. Improving integrated team working to support people to die in the place of their choice. Bowers B, Roderick S, Arnold S, Nurs Times 2010 106 32 14 16 21322420
59. Achieving the preferred place of care for hospitalized patients at the end of life. Gerrard R, Campbell J, Minton O, Moback B, Skinner C, McGowan C, Stone PC, Palliat Med 2011 25 4 333 336 10.1177/0269216310387459 21228096
60. A retrospective analysis of preferred and actual place of death for hospice patients. Holdsworth L, Fisher S, Int J Palliat Nurs 2010 16 9 424 430 20871496
61. An audit of place of death of cancer patients in a semi-rural Scottish practice. Carroll DS, Palliat Med 1998 12 1 51 53 10.1191/026921698666041220 9616459
62. Factors associated with location of death (home or hospital) of patients referred to a palliative care team. McWhinney IR, Bass MJ, Orr V, CMAJ 1995 152 3 361 367 7530164
63. Can this patient be discharged home? Factors associated with at-home death among patients with cancer. Alonso-Babarro A, Bruera E, Varela-Cerdeira M, Boya-Cristia MJ, Madero R, Torres-Vigil I, De Castro J, Gonzalez-Baron M, J Clin Oncol 2011 29 9 1159 1167 10.1200/JCO.2010.31.6752 21343566
64. Time to get it right: are preferences for place of death more stable than we think? Higginson IJ, Hall S, Koffman J, Riley J, Gomes B, Palliat Med 2010 24 3 352 353 10.1177/0269216309360489 20145092
65. Informal carer bereavement outcome: relation to quality of end of life support and achievement of preferred place of death. Grande GE, Ewing G, National Forum for Hospice at Home, Palliat Med 2009 23 3 248 256 10.1177/0269216309102620 19251831
66. Prebereavement and postbereavement struggles and triumphs of midlife widows. Scannell-Desch EA, J Hosp Palliat Nurs 2005 7 1 15 22
67. Homecare at the end of life: a study of fifteen patients. Sorbye LW, Scand J Caring Sci 1990 4 3 107 113 10.1111/j.1471-6712.1990.tb00056.x 2218201
68. What influences decisions around the place of care for terminally ill cancer patients? McCall K, Rice AM, Int J Palliat Nurs 2005 11 10 541 547 16301958
69. Discussing end-of-life issues with terminally ill cancer patients and their carers: a qualitative study. Clayton JM, Butow PN, Arnold RM, Tattersall MH, Support Care Cancer 2005 13 8 589 599 10.1007/s00520-004-0759-2 15645187
70. Variations in and factors influencing family members' decisions for palliative home care. Stajduhar KI, Davies B, Palliat Med 2005 19 1 21 32 10.1191/0269216305pm963oa 15690865
71. Understanding disparities in aggressive care preferences between patients with terminal illness and their family members. Yun YH, You CH, Lee JS, Park SM, Lee KS, Lee CG, Kim S, J Pain Symptom Manage 2006 31 6 513 521 10.1016/j.jpainsymman.2005.11.009 16793491
72. A qualitative investigation of the palliative care needs of terminally ill people who live alone. Aoun S, Kristjanson LJ, Oldham L, Currow D, Collegian 2008 15 1 3 9 10.1016/j.colegn.2007.11.005 18341071
73. A terminal diagnosis: the carers' perspective. Riley J, Fenton G, Couns Psychother Res 2007 7 2 86 91 10.1080/14733140701327909
74. The environment or disease: association or causation. Hill AB, Proc R Soc Med 1965 58 295 300 14283879
75. Ecological correlations and the behavior of individuals. Robinson WS, J Am Stat Assoc 1935 30 517 536
76. Which patients with cancer die at home? A study of six European countries using death certificate data. Cohen J, Houttekier D, Onwuteaka-Philipsen B, Miccinesi G, Addington-Hall J, Kaasa S, Bilsen J, Deliens L, J Clin Oncol 2010 28 13 2267 73 10.1200/JCO.2009.23.2850 20351336