Supporting Family Caregivers at the End of Life: "They Don't Know What They Don't Know"

JAMA

Volumn 291, Issue 4, 2004, Pages 483-491

  Rabow, Michael W ^a,d   Hauser, Joshua M ^c   Adams, Jocelia ^b  

^a UNIVERSITY OF CALIFORNIA   (United States)

^b Center of Caregiver Training   (United States)

^c NORTHWESTERN UNIVERSITY   (United States)

^d UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CAREGIVER; EMOTION; EMPATHY; FAMILY; FINANCE; HOME CARE; HUMAN; HUMAN RELATION; INTENSIVE CARE; MEDICAL DECISION MAKING; MENTAL HEALTH; PATIENT CARE; PHYSICAL CAPACITY; PRIORITY JOURNAL; REVIEW; TERMINAL CARE;

EID: 1642458586     PISSN: 00987484     EISSN: None     Source Type: Journal    
DOI: 10.1001/jama.291.4.483     Document Type: Review

References (98)

1. Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. Assistance from family members, friends, paid caregivers, and volunteers in the care of terminally ill patients. N Engl J Med. 1999;341:956-963.
2. Covinsky KE, Goldman L, Cook EF, et al, for the SUPPORT Investigators. The impact of serious illness on patients' families. JAMA. 1994;272:1839-1844.
3. Hurley AC, Volicer L. Alzheimer disease: "It's okay, Mama, if you want to go, it's okay." JAMA. 2002;288:2324-2331.
4. Langa KM, Vijan S, Hayward RA, et al. Informal caregiving for diabetes and diabetic complications among elderly Americans. J Gerontol B Psychol Sci Soc Sci. 2002;57:S177-S186.
5. Navaie-Waliser M, Feldman PH, et al. When the caregiver needs care: the plight of vulnerable caregivers. Am J Public Health. 2002;92:409-413.
6. Donelan K, Hill CA, Hoffman C, et al. Challenged to care: informal caregivers in a changing health system Health Aff (Millwood). 2002;21:222-231.
7. Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL. Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med. 2000;132:451-459.
8. Siegel K, Raveis VH, Houts P, Mor V. Caregiver burden and unmet patient needs. Cancer. 1991;68:1131-1140.
9. Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages, Washington, DC: US General Accounting Office; 1994. GAO/HEHS 95-26.
10. Collins C, Ogle K. Patterns of predeath service use by dementia patients with a family caregiver. J Am Geriatr Soc. 1994;42:719-722.
11. Reuben SH, ed. Voices of a Broken System: Real People, Real Problems. President's Cancer Panel, Report of the Chairman 2000-2001. Bethesda, Md: National Cancer Institute, National Institutes of Health; 2001.
12. Langa KM, Chernew ME, Kabeto MU. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. J Gen Intern Med. 2001;16:770-778.
13. Hayman JA, Langa KM, Kabeto MU, et al. Estimating the cost of informal caregiving for elderly patients with cancer. J Clin Oncol. 2001;19:3219-3225
14. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289:2387-2392.
15. Metlife Mature Market Institute. The Metlife Joggling Act Study: Balancing Caregiving With Work and the Costs Involved. New York, NY: Metropolitan Life Insurance Co; November 1999.
16. Hickenbottom SI, Fendrick AM, Kutcher JS, Kabeto MU, Katz SJ, Langa KM. A national study of the quantity and cost of informal caregiving for the elderly with stroke. Neurology. 2002;58:1754-1759.
17. McConnell S, Riggs J. The policy challenge of Alzheimer's disease. Generations. 1999;23:69-74. Available at: http://www.csa.com/hottopics/alz-sa/biblio45 .html. Accessibility verified December 29, 2003.
18. Covinsky KE, Eng C, Lui LY, et al. Reduced employment in caregivers of frail elders: impact of ethnicity, patient clinical characteristics, and caregiver characteristics. J Gerontol A Biol Sci Med Sci. 2001;56:M707-M713.
19. Slutsman J, Emanuel LL, Fairclough D, Bottorff D, Emanuel EJ. Managing end-of-life care: comparing the experiences of terminally ill patients in managed care and fee for service. J Am Geriatr Soc. 2002;50:2077-2083.
20. Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients' perspectives. JAMA. 1999;281:163-168.
21. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA Factors considered important at the end of life by patients, families, physicians, and other care providers. JAMA. 2000;284:2476-2482.
22. Covinsky KE, Landefeld CS, Teno J, et al. Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? Arch Intern Med. 1996;156:1737-1741.
23. Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA. 2000;284:2460-2468.
24. Ganzini L, Harvath TA, Jackson A, Goy ER, Miller LL, Delorit MA. Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. N Engl J Med. 2002;347:582-588.
25. Cochrane JJ, Goering PN, Rogers JM. The mental health of informal caregivers in Ontario: an epidemiological survey. Am J Public Health. 1997;87:2002-2007.
26. Pochard F, Azoulay E, Chevret S, et al, for the French FAMIREA Group. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med. 2001;29:1893-1897.
27. Haley WE, LaMonde LA, Han B, Narramore S, Schonwetter R. Family caregiving in hospice: effects on psychological and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. Hosp J. 2001;15:1-18.
28. Cannuscio CC, Jones C, Kawachi I, Colditz GA, Berkman L, Rimm E. Reverberations of family illness: a longitudinal assessment of informal caregiving and mental health status in the Nurses' Health Study. Am J Public Health. 2002;92:1305-1311.
29. Stein MD, Crystal S, Cunningham WE, et al. Delays in seeking HIV care due to competing caregiver responsibilities. Am J Public Health. 2000;90:1138-1140.
30. Smith MC, Ellgring H, Oertel WH. Sleep disturbances in Parkinson's disease patients and spouses. J Am Geriatr Soc. 1997;45:194-199.
31. Cameron JI, Franche RL, Cheung AM, Stewart DE. Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer. 2002;94:521-527.
32. Silliman RA. Predictors of family caregivers' physical and psychological health following hospitalization of their elders. J Am Geriatr Soc. 1993;41:1039-1046.
33. Schulz R, Beach S. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282:2215-2219.
34. Levine C, Zuckerman C. The trouble with families: toward an ethic of accommodation. Ann Intern Med. 1999;130:148-152.
35. Crawley LM, Marshall PA, Lo B, Koenig BA. Strategies for culturally effective end-of-life care. Ann Intern Med. 2002;136:673-679.
36. Rabow MW, Schanche K, Petersen J, Dibble SL, McPhee SJ. Patient perceptions of an outpatient palliative care intervention: "it had been on my mind before, but I did not know how to start talking about death." J Pain Symptom Manage. 2003;26:1010-1015.
37. Andolsek KM, Clapp-Channing NE, Gehlbach SH, et al. Caregivers and elderly relatives: the prevalence of caregiving in a family practice. Arch Intern Med. 1988;148:2177-2180.
38. Council on Scientific Affairs, American Medical Association. Physicians and family caregivers: a model for partnership. JAMA. 1993;269:1282-1284.
39. Desbiens NA, Mueller-Rizner N, Virnig B, Lynn J. Stress in caregivers of hospitalized oldest-old patients. J Gerontol A Biol Sci Med Sci. 2001;56:M231-M235.
40. Goldman L, Pantilat SZ, Whitcomb WF. Passing the clinical baton: 6 principles to guide the hospitalist. Am J Med. 2001;111:36S-39S
41. Steinhauser KE, Christakis NA, Clipp EC, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22:727-737.
42. von Gunten CF, Ferris F, Emanuel L. Ensuring competency in end-of-life care: communication and relational skills. JAMA. 2000;284:3051-3057.
43. Finucane TE, Christmas C, Traveis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999;282:1365-1370.
44. Murphy DJ, Burrows D, Santilli S, et al. The influence of the probability of survival on patients' preferences regarding cardiopulmonary resuscitation. N Engl J Med. 1994;330:545-549.
45. Christakis NA, Iwashyna TJ. The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses. Soc Sci Med. 2003;57:465-475.
46. Quill TE. Initiating end-of-life discussions with seriously ill patients: addressing the "elephant in the room." JAMA. 2000;284:2502-2507.
47. Rabow MW, McPhee SJ. Beyond breaking bad news: how to help patients who suffer. West J Med. 1999;171:260-263.
48. Quill TE, Arnold RM, Platt F. "I wish things were different": expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med. 2001;135:551-555.
49. Prendergast TJ, Puntillo KA. Withdrawal of life support: intensive caring at the end of life. JAMA. 2002;288:2732-2740.
50. Curtis JR, Patrick DL, Shannon SE, Treece PD, Engelberg RA, Rubenfeld GD. The family conference as a focus to improve communication in the intensive care unit: opportunities for improvement. Crit Care Med. 2001;29:N26-N33.
51. Lynn J, Teno JM, Phillips RS, et al. Perceptions of family members of the dying experience of older and seriously ill patients. Ann Intern Med. 1997;126:97-106
52. Lilly CM, De Meo DL, Sonna LA, et al. An intensive communication intervention for the critically ill. Am J Med 2000;109:469-475.
53. Benson J, Britten N. Respecting the autonomy of cancer patients when talking with their families: qualitative analysis of semistructured interviews with patients. BMJ. 1996;313:729-731.
54. Office of Civil Rights. Summary of the HIPAA Privacy Rule. Available at: http: //www.hhs.gov/ocr/hipaa. Accessed October 19, 2003. Accessibility verified December 21, 2003.
55. Office of Civil Rights Web site. Medical privacy-national standards to protect the privacy of personal health information. Available at: http://www.hhs.gov /ocr/hipaa/links.html. Accessed October 19, 2003. Accessibility verified December 21, 2003.
56. Danis M, Southerland LI, Garrett JM, et al. A prospective study of advance directives for life-sustaining care. N Engl J Med. 1991;324:882-888.
57. Emanuel LL. Advance directives: do they work? J Am Coll Cardiol. 1995;25:35-38.
58. Hanson LC, Tulsky JA, Danis M. Can clinical interventions change care at the end of life? Ann Intern Med. 1997;126:381-388.
59. Field MJ, Cassell CK. Approaching Death: Improving Care at the End of Life. Washington, DC: Institute of Medicine Committee on Care at the End of Life, National Academy Press; 1997.
60. Lynn J, Goldstein NE. Advance care planning for fatal chronic illness: avoiding commonplace errors and unwanted suffering. Ann Intern Med. 2003;138:812-818.
61. Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA. 1995;274:820-825.
62. Kagawa-Singer M, Blackhall U. Negotiating cross-cultural issues at the end of life: "you got to go where he lives." JAMA. 2001;286:2993-3001.
63. Karlawish JH, Quill T, Meier DE. A consensus-based approach to providing palliative care to patients who lack decision-making capacity: ACP-ASIM End-of-Life Care Consensus Panel. Ann Intern Med. 1999;130:835-840.
64. Morris BA, Van Niman SE, Perlin T, et al. Health care professionals' accuracy in predicting patients' preferred code status. J Fam Pract. 1995;40:41-44.
65. Sulmasy DP, Terry PB, Weisman CS, et al. The accuracy of substituted judgments in patients with terminal diagnoses. Ann Intern Med. 1998;128:621-629.
66. Hare J, Pratt C, Nelson C. Agreement between patients and their self-selected spouse on difficult medical decisions. Arch Intern Med. 1992;152:1049-1054.
67. Freid T, Bradley EH, Towle V. Valuing the outcomes for treatment: do patients and their caregivers agree? Arch Intern Med. 2003;163:2073-1078.
68. McCallion P, Toseland RW, Freeman K. An evaluation of a family visit education program. J Am Geriatr Soc. 1999;47:203-214.
69. Ferrell BR, Juarez G, Borneman T. Use of routine and breakthrough analgesia in home care. Oncol Nurs Forum. 1999;26:1655-1661.
70. Falk S, Fallon M. ABC of palliative care: emergencies. BMJ. 1997;315:1525-1528.
71. Oldenquist GW, Scott L, Finucane TE. Home care: what a physician needs to know. Cleve Clin J Med. 2001;68:433-440.
72. Stuck AE, Egger M, Hammer A, Minder CE, Beck JC. Home visits to prevent nursing home admission and functional decline in elderly people: systematic review and meta-regression analysis. JAMA. 2002;287:1022-1028.
73. van Haastregt JC, Diederiks JP, van Rossum E, de Witte LP, Crebolder HF. Effects of preventive home visits to elderly people living in the community: systematic review. BMJ. 2000;320:754-758.
74. Matter CA, Speice JA, McCann R, et al. Hospital to home: improving internal medicine residents' understanding of the needs of older persons after a hospital stay. Acad Med. 2003;78:793-797.
75. Billings JA, Ferris FD, Macdonald N, von Gunten C, for the Hospice Home Care Working Group. The role of palliative care in the home in medical education: report from a national consensus conference. J Palliat Med. 2001;4:361-371.
76. Shugarman LR, Buttar A, Fires BE, Moore T, Blaum CS. Caregiver attitudes and hospitalization risk in Michigan residents receiving home- and community-based care. J Am Geriatr Soc. 2002;50:1079-1085.
77. Yaffe K, Fox P, Newconmer R, et al. Patient and caregiver characteristics and nursing home placement in patients with dementia. JAMA. 2002;287:2090-2097.
78. Karlawish JH, Casarett D, Klocinski J, Clark CM. The relationship between caregivers' global ratings of Alzheimer's disease patients' quality of life, disease severity, and the caregiving experience. J Am Geriatr Soc. 2001;49:1066-1070.
79. Bascom PB, Tolle SW. Care of the family when the patient is dying. West J Med. 1995;163:292-296.
80. Mittleman MS, Ferris SH, Shulman E, Steinberg G, Levin B. Family intervention to delay nursing home admission: a randomized controlled trial. JAMA. 1996;276:1725-1731.
81. Zarit SH, Stephens MA, Townsend A, Greene R. Stress reduction for family caregivers: effects of adult day care use. J Gerontol B Psychol Sci Soc Sci. 1998;53:S267-S277.
82. Lawton MP, Brody EM, Saperstein AR. Controlled study of respite service for caregivers of Alzheimer's patients. Gerontologist. 1989;29:8-16.
83. Herbert R, Levesque L, Vezina J, et al. Efficacy of a psychoeducative group program for caregivers of demented persons living at home: a randomized controlled trial. J Gerontol B Psychol Sci Soc Sci. 2003;58:S58-S67.
84. Yin T, Zhou Q, Bashford C. Burden on family members: caring for frail elderly: a meta-analysis of interventions. Nurs Res. 2002;51:199-208.
85. Mant J, Carter J, Wade DT, Winner S. Family support for stroke: a randomized controlled trial. Lancet. 2000;356:808-813.
86. Prigerson HG, Jacobs SC. Caring for bereaved patients: "all the doctors just suddenly go." JAMA. 2001;286:1369-1376.
87. Schulz R, Beach SR, Lind B, et al. Involvement in caregiving and adjustment to death of a spouse: findings from the Caregiver Health Effects Study. JAMA. 2001;285:3123-3129.
88. Bass DM, Bowman K, Noelker LS. The influence of caregiving and bereavement support on adjusting to an older relative's death. Gerontologist. 1991;31:32-42.
89. Bedell SE, Cadenhead K, Graboys TB. The doctor's letter of condolence. N Engl J Med 2001;344:1162-1164.
90. Main J. Improving management of bereavement in general practice based on a survey of recently bereaved subjects in a single general practice. Br J Gen Pract. 2000;50:863-866.
91. Morgan DL. Adjusting to widowhood: do social networks really make it easier? Gerontologist. 1989;29:101-107.
92. Schneider DS, Sledge PA, Shuchter SR, Zisook S. Dating and remarriage over the first two years of widowhood. Ann Clin Psychiatry. 1996;8:51-57.
93. Marmar CR, Horowitz MJ, Weiss DS, Wilner NR, Kaltreider NB. A controlled trial of brief psychotherapy and mutual help group treatment of conjugal bereavement. Am J Psychiatry. 1988;145:203-209.
94. Prigerson HG, Reynolds CF III, Frank E, Kupfer DJ, George CJ, Houck PR. Stressful life events, social rhythms, and depressive symptoms among the elderly: an examination of hypothesized causal linkages. Psychiatry Res. 1994;51:33-49.
95. Horowitz MJ, Siegel B, Holen A, Bonanno GA, Milbrath C, Stinson CH. Diagnostic criteria for complicated grief disorder. Am J Psychiatry. 1997;154:904-910.
96. von Gunten CF, Ferris FD, D'Antuono R, Emanuel LL. Recommendations to improve end-of-life care through regulatory change in US Health Care Financing. J Palliat Med. 2002;5:35-41.
97. Saunders C. Pain and impending death. In: Wall PD, Melzack R, eds. Textbook of Pain. New York, NY: Churchill Livingston; 1989:624-631.
98. Chochinov HM. Dignity-conserving care-a new model for palliative care: helping the patient feel valued. JAMA. 2002;287:2253-2260.