Caregiving for advanced chronic illness patients

Techniques in Regional Anesthesia and Pain Management

Volumn 9, Issue 3, 2005, Pages 122-132

  Wilkinson, Anne M ^a   Lynn, Joanne ^a  

^a RAND CORPORATION   (United States)

Author keywords

Cancer; Care giving; Chronic illness trajectories; Chronic obstructive pulmonary disease; Congestive heart failure; Dementia; End of life

Indexed keywords

AGING; CANCER; CAREGIVER; CHRONIC DISEASE; CHRONIC OBSTRUCTIVE LUNG DISEASE; CONGESTIVE HEART FAILURE; CRITICAL ILLNESS; DEMENTIA; DISABILITY; DISEASE COURSE; DYING; EMOTION; EXPERIENCE; FAMILY; FATALITY; HEALTH CARE; HEALTH CARE ACCESS; HEALTH CARE NEED; HEALTH CARE SYSTEM; HOME CARE; HUMAN; INTERPERSONAL COMMUNICATION; METASTASIS; MULTIPLE ORGAN FAILURE; PAIN; PATIENT CARE; RELATIVE; REVIEW; SOCIAL SUPPORT; STROKE; SUDDEN DEATH; SYMPTOM; TERMINAL CARE;

EID: 25444474934     PISSN: 1084208X     EISSN: None     Source Type: Journal    
DOI: 10.1053/j.trap.2005.06.004     Document Type: Review

References (105)

1. M. Field, C. Cassell Approaching Death Improving Care at the End of Life 1997 National Academy Press Washington, DC
2. C. Canam, S. Acorn Quality of life for family caregivers of people with chronic health problems Rehab Nursing 24 1999 192 196
3. P. Erickson, R. Wilson, I. Shannon Years of healthy life Healthy People 2000 7 1995 1 15
4. C. Seale Changing patterns of death and dying Soc Sci Med 51 2000 917 930
5. G. Anderson, J. Horvath, C. Anderson Chronic Conditions Making the Case for Ongoing Care Monograph 2002 Johns Hopkins University Baltimore, MD
6. P.S. Arno, C. Levine, M.M. Memmott The economic value of informal caregiving Health Aff 18 1999 182 188, updated data from 2001
7. US General Accounting Office Long-term care diverse, growing population includes millions of Americans of all ages 1994 GAO/HEHS 95-96, Washington, DC, GAO
8. Agency for Healthcare Research and Quality The Characteristics of Long-Term Care Users 2000 AHRQ Silver Spring, MD
9. National Alliance for Caregiving/American Association of Retired Persons (AARP), Family Caregiving in the US Findings from a National Survey, Washington, DC 1997 8
10. C. Levine, A.N. Kuerbis, D.A. Gould A Survey of Family Caregivers in New York City Findings and Implications for the Health Care System 2000 ix xiv United Hospital Fund of New York, NY
11. C. Levine Family caregivers burdens and opportunities R.S. Morrison D. Meier C. Capello Geriatric Palliative Care 2003 Oxford University Press London 376 385
12. Levine C, Reinhard SC, Feinberg LF: Family caregivers on the job: moving beyond ADLs and IADLs. Generations XXVII:17-23, Winter, 2003-2004
13. B.A. Given, C.W. Given, S. Kozachik Family support in advanced cancer CA Cancer J Clin 51 2001 213 231
14. C. Nijober, M. Triemstra, R. Tempelaar Patterns of caregiver experiences among partners of cancer patients Gerontologist 40 2000 738 746
15. E. Sales Family burden and quality of life Qual Life Res 12 suppl 1 2003 33 41
16. D.E. Biegel, E. Sales, R. Schulz Family Caregiving in Chronic Illness 1991 Sage Publications Thousand Oaks, CA
17. R. Schulz, A.T. O'Brien, J. Bookwala Psychiatric and physical morbidity effects of dementia caregiving prevalence, correlates, and causes Gerontologist 35 1995 771 791
18. R. Schulz, S.R. Beach Caregiving as a risk factor for mortality J Am Med Assoc 282 1999 2215 2219
19. P. Vitaliano Physiological and physical concomitants of caregiving introduction to special issue Ann Behav Med 19 1997 75 77
20. J. Kiecolt-Glaser, R. Glaser, S. Gravenstein Chronic stress alters the immune response to influenza virus vaccine in older adults Proc Natl Acad Sci USA 93 1996 3043 3047
21. D.M. Kriegsman, B.W. Penninx, J.T. van Eijk Chronic disease in the elderly and its impact on the family Family Syst Med 12 1994 249 267
22. R. McCorkle, J.V. Pasacreta Enhancing caregiver outcomes in palliative care Cancer Control 8 2001 36 45
23. E.K. Abel Family care of the frail elderly E.K. Abel M.K. Nelson Circles of Care Work and Identify in Women's Lives 1990 State University of New York Press Albany, NY 65 91
24. J. Koffman, P. Snow Informal carers of dependants with advanced disease J.M. Addington-Hall I. Higginson Palliative Care for Non-Cancer Patients 2001 Oxford University Press London
25. B. Ferrell The family D. Doyle G.W.C. Hanks N. MacDonald The Oxford Textbook of Palliative Medicine (ed 2) 1998 Oxford University Press London 909 918
26. B. Ferrell, T. Borneman Pain and suffering at the end of life for older patients and their families Generations 23 1999 12 17
27. E.J. Emanuel, D.L. Fairclough, J. Slutsman Understanding economic and other burdens of terminal illness the experience of patients and their caregivers Am J Intern Med 132 2000 451 459
28. K.E. Covinsky, L. Goldman, E.F. Cook The impact of serious illness on patient's families J Am Med Assoc 272 1989 1839 1844
29. M. Glajchen The emerging role and needs of family caregivers in cancer care J Support Oncol 2 2004 145 155
30. A.P. Fengler, N. Goodrich Wives of elderly disabled men the hidden patient Gerontologist 19 1979 175 183
31. J.M. Corbin The Corbin and Strauss chronic illness trajectory model an update Sch Inq Nurs Pract 12 1998 33 41
32. B.G. Glazer, A.L. Strauss Time for Dying 1968 Aldine Publishing Chicago, IL
33. R. McCorkle, L.S. Jost, C. Jepson A cancer experience relationship of patient psychosocial responses to caregiver burden over time Psycho-Oncology 2 1993 21 32
34. J.R. Lunney, J. Lynn, C. Hogan Profiles of elderly Medicare decedents JAGS 50 2002 1108 1112
35. S.A. Murray, K. Boyd, M. Kendall Dying of lung cancer or cardiac failure prospective qualitative interview study of patients and their careers in the community Br Med J 325 2002 915 929
36. A.E. Rogers, J.M. Addington-Hall, A.J. Abery Knowledge and communication difficulties for patients with chronic heart failure qualitative study Br Med J 321 2000 605 607
37. American Cancer Society Cancer Facts and Figures 2004 2004 ACS Atlanta, GA
38. K.S. Ogle, G.M. Swanson, N. Woods Cancer and comorbidity redefining chronic diseases Cancer 88 2000 653 663
39. J. Lynn, A. O'Mara Reliable, high-quality, efficient end-of-life care for cancer patients economic issues and barriers K. Foley H. Gelband Improving Palliative Care for Cancer 2002 Institute of Medicine, National Academy Press Washington DC 67 95
40. J.M. Teno, S. Weitzen, M.L. Fennell Dying trajectory in the last year of life does cancer trajectory fit other diseases? J Palliative Med 4 2001 457 464
41. R. Twycross, I. Lichter The terminal phase D. Doyle G. Hanks N. MacDonald Oxford Textbook of Palliative Medicine (ed 2) 1999 Oxford University Press London 977 994
42. E.P. McCarthy, R.S. Phillips, Z. Zhong Dying with cancer patients' function, symptoms, and care preferences as death approaches JAGS 48 2000 S110 S121
43. J. Ellershaw, C. Ward Care of the dying patient the last hours or days of life Br Med J 326 2003 30 34
44. J.A. Hayman, K.M. Langa, M.U. Kabeto Estimating the cost of informal caregiving for elderly patients with cancer J Clin Oncol 19 2001 3219 3225
45. G. Juarez, B.R. Ferrell Family and caregiver involvement in pain management Clin Geriatr Med 12 1996 531 547
46. E. Redinbaugh, A. Baum, S. Tarbell End-of-life caregiving what helps family caregivers cope? J Palliative Med 6 2003 901 909
47. O. Gelbar Gender as a predictor of burden and psychological distress of elderly husbands and wives of cancer patients Psycho-Oncology 8 1999 287 297
48. B. Axelsson, P.O. Sjoden Quality of life of cancer patients and their spouses in palliative home care J Palliative Med 12 1999 29 39
49. D.L. Patrick, S.L. Fertetich, P.S. Frame National Institutes of Health State-of-the-Science Conference Statement: symptom management in cancer: pain, depression, and fatigue J Natl Cancer Inst Monogr 32 2004 9 16
50. A. Rao, H.J. Cohen Symptom management in the elderly cancer patient fatigue, pain, and depression J Natl Cancer Inst Monogr 32 2004 150 171
51. C.M. Puchalski, Z. Zhong, M.M. Jacobs Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, Hospitalized Elderly Longitudinal Project J Am Geriatr Soc 48 2000 S84 S90
52. R. Bernabei, G. Gambassi, K. Lapane Management of pain in elderly patients with cancer J Am Med Assoc 279 1998 1877 1882
53. C.S. Cleeland Undertreatment of cancer pain in elderly patients J Am Med Assoc 279 1998 1914 1915
54. J.J. Bonicia, V. Bentafridda, R.G. Twycross Cancer pain J.J. Bonica The Management of Pain (ed 2) 1990 Lea and Febiger Philadelphia, PA 440 460
55. K. Foley Pain assessment and cancer pain syndromes D. Doyle G.W.C. Hanks N. MacDonald Palliative Medicine 1999 Oxford University Press New York 310 331
56. W. Breitbart, H. Chochinov, S. Passik Psychiatric aspects of palliative care D. Doyle G.W.C. Hanks N. MacDonald Palliative Medicine (ed 2) 1994 Oxford University Press New York 933 954
57. E. Bruera Research into symptoms other than pain D. Doyle G.W.C. Hanks N. MacDonald Palliative Medicine (ed 2) 1994 Oxford University Press New York, NY 179 185
58. N. Wells, J.T. Hepworth, B.A. Murphy Improving cancer pain management through patient and family education J Pain Sympt Manage 25 2003 344 356
59. S. Aranda, P. Yates, H. Edwards Barriers to effective cancer pain management a survey of Australian family caregivers Eur J Cancer Care 13 2004 336 343
60. J.A. Paice, C. Toy, S. Shott Barriers to cancer pain relief fear of tolerance and addiction J Pain Sympt Manage 16 1998 1 9
61. C. Miaskowski, L. Kragness Differences in mood states health status, and caregivers of oncology outpatients with and without cancer-related pain J Pain Sympt Manage 13 1997 138 147
62. C. Miaskowski, E.F. Zimmer Differences in patients' and family caregivers' perceptions of the pain experience influence patient and caregiver outcomes Pain 72 1997 217 226
63. Yates P, Aranda S, Edwards H: Family caregivers' experiences and involvement with cancer pain management. J Palliat Care (in press)
64. R.K. Wong, E. Franssen, E. Szumacher What do patients living with advanced cancer and their carers want to know? A needs assessment Support Care Cancer 10 2002 408 415
65. J. Juenger, D. Schelberg, S. Kraemer Health related quality of life in patients with congestive heart failure comparison with other chronic disease and relation to functional variables Heart 87 2002 235 241
66. L.W. Miller, E.D. Missov Epidemiology of heart failure Cardiol Clin 19 2001 547 555
67. D. Levy, S. Kenchaiah, M.G. Larson Long-term trends in the incidence of and survival with heart failure N Engl J Med 347 2002 1397 1402
68. J. Lynn, W. Ely, Z. Zhong Living and dying with chronic obstructive pulmonary disease J Am Geriatr Soc 48 2000 S91 S100
69. P.A. Meyer, D.M. Mannino, S.C. Redd Characteristics of adults dying with COPD Chest 122 2002 2003 2008
70. I.D. Johnston, R.J. Prescott, J.C. Chalmers British Thoracic Society study of cryptogenic fibrosing alveolitis current presentation and initial management Thorax 42 1997 38 44
71. F. Formiga, D. Chivite, C. Ortega End-of-life preferences in elderly patients admitted for heart failure Q J Med 97 2004 803 808
72. K.O. Akosah, A.M. Schaper, P. Havlik Improving care for patients with chronic heart failure in the community the importance of a disease management program Chest 122 2002 906 912
73. N.J. Brass-Mynderse Disease management for chronic congestive heart failure J Cardiovasc Nurs 11 1996 54 62
74. C. Levine, A. Hart Doing whatever needs to be done Caregiver's perspectives on ADLs and IADLs C. Levine Family Caregivers on the Job Moving beyond ADLs and IADLs 2004 United Hospital Fund New York, NY 1 36
75. J. Lynn, F.E. Harrell, F. Cohn Defining the 'Terminally Ill' insights from SUPPORT Duquesne Law Rev 335 1996 311 336
76. G.A. Sachs, J.W. Shega, D. Cox-Haley Barriers to excellent end-of-life care for patients with dementia J Gen Intern Med 19 2004 1057 1063
77. K.M. MacMahon, G.Y. Lip Psychological factors in heart failure a review of the literature Arch Intern Med 162 2002 509 516
78. P.H. Bailey The dyspnea-anxiety-dyspnea cycle-COPD patients' stories of breathlessness "It's scary when you can't breathe." Qual Health Res 14 2004 760 778
79. E.P. Havranek, M.G. Ware, B.D. Lowes Prevalence of depression in congestive heart failure Am J Cardiol 84 1999 348 350
80. J.G. Van Manen, P.J. Bindels, F.W. Dekker Risk of depression in patients with chronic obstructive pulmonary disease and its determinants Thorax 57 2002 412 416
81. J. Lynn, W. Ely, Z. Zhong Living and dying with chronic obstructive pulmonary disease J Am Geriatr Soc 48 2000 S91 S100
82. J.W. Levenson, E.P. McCarthy, J. Lynn The last six months of life for patients with congestive heart failure J Am Geriatr Soc 48 2000 S101 S109
83. H. Prigerson Cost to society of family caregiving for patients with end-stage Alzheimer's disease N Engl J Med 349 2003 1891 1982
84. J. Watson Frailty-and its dangerous effects-might be preventable. Current Clinical Issues Ann Intern Med 141 2004 489 492
85. L.P. Fried, C.M. Tangen, J. Walston Frailty in older adults evidence for a phenotype J Gerontol A Biol Sci Med Sci 56 2001 M146 M156
86. L.S. Honig, R. Mayeux Natural history of Alzheimer's disease Aging Clin Exp Res 13 2001 171 182
87. J. Keene, T. Hope, C.G. Fairburn Death and dementia Intern J Geriatr Psychol 16 2001 969 974
88. L. Volicer, A. Hurley Management of behavioral symptoms in progressive degenerative dementias J Gerontol Med Sci 58A 2003 837 845
89. R. Schulz, A.B. Mendelsohn, W. Haley End-of-life care and the effects of bereavement on family caregivers of persons with dementia N Engl J Med 349 2003 1936 1942
90. K.M. Langa, M.E. Chernew, M.U. Kabeto National estimates of the quantity and cost of informal caregiving for the elderly with dementia J Gen Intern Med 16 2001 770 778
91. M.J. Moore, C.W. Shu, E.C.P. Clipp Informal costs of dementia care estimates from the National Longitudinal Caregiver Study J Gerontol B Psychol Sci Soc Sci 56B 2001 S219 S228
92. Alzheimer's Association. Statistics about Alzheimer's disease. http://www.alz.org. Accessed 2004
93. P.N. Tariot Medical management of advanced dementia J Am Geriatr Soc 51 2003 S305 S313
94. K. Hooker, S.R. Bowman, D.P. Coehlo Behavioral change in persons with dementia Relationships with mental and physical health of caregivers J Gerontol Psychol Sci 57B 2002 P453 P460
95. G.J. Kuhlman, H.S. Wilson, S.A. Hutchinson Alzheimer's disease and family caregiving Critical synthesis of the literature and research agenda Nursing Res 40 2001 331 337
96. J.W. Shega, G.W. Hougham, C.B. Stocking Pain in community-dwelling persons with dementia frequency, intensity, and congruence between patient and caregiver report J Pain Sympt Manage 28 2004 585 592
97. D.C. Malloy, T. Hadjistavropoulos The problem of pain management among persons with dementia, personhood, and the ontology of relationships Nurs Philos 5 2004 147 159
98. H. Krulewitch, M.R. London, V.J. Skakel Assessment of pain in cognitively impaired older adults a comparison of pain assessment tools and their use by nonprofessional caregivers J Am Geriatr Soc 48 2000 1607 1611
99. K. Brazil, M. Bedard, K. Willison Caregiving and its impact on families of the terminally ill Aging Mental Health 7 2003 376 382
100. J.R. Curtis, M.D. Wenrich, J.D. Carline Patients' perspectives on physician skill in end-of-life care differences between patients with COPD, Cancer, and AIDS CHEST 122 2002 356 362
101. J. Wennberg, J. Freeman, R. Shelton Hospital use and mortality among Medicare beneficiaries in Boston and New Haven N Engl J Med 321 1989 1168 1173
102. R.S. Pritchard, E.S. Fisher, J.M. Teno Influence of patient preferences and local health system characteristics on the place of death J Am Geriatr Soc 45 1998 1242 1250
103. J. Flory, Y. Young-Xu, I. Gurol Place of dealth U.S. trends since 1980 Health Aff 23 2004 194 200
104. M. Mezey, N. Neveloff Dubler, E. Mitty What impact do setting and trainsition have on the quality of life at the end of life and the quality of the dying process? Gerontologist 42 Special Issue III 2002 54 67
105. K.E. Steinhauser, N.A. Christakis, E.C. Clipp Factors considered important at the end of life by patients, family, physicians, and other care providers J Am Med Assoc 284 2000 2746 2782