End-of-Life Care for Patients with Dementia
http://www.100md.com
《新英格兰医药杂志》
To the Editor: Schulz et al. (Nov. 13 issue)1 have done a service in drawing attention to the substantial burdens experienced by caregivers of patients with dementia. Missing from the Discussion section of their report and from the Perspective article by Prigerson,2 however, is any mention of the extent to which life-prolonging therapies in patients with profound dementia, such as artificial feeding and antibiotics, may have contributed to the suffering of both patients and caregivers. The fact that about 40 percent of the patients cared for by the participants in the study died in the hospital suggests that, at least at the end of life, patients' suffering and the burden on caregivers might have been reduced by decisions to forgo life-sustaining treatment and comfort-care plans.3 For patients with profound dementia, the presumption to "err on the side of life" is open to question.4 In this situation, interventions that prolong life should require justification, especially when the burdens imposed on the patient by such treatment outweigh the benefits.5
Franklin G. Miller, Ph.D.
National Institutes of Health
Bethesda, MD 20815
fmiller@nih.gov
References
Schulz R, Mendelsohn AB, Haley WE, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med 2003;349:1936-1942.
Prigerson HG. Costs to society of family caregiving for patients with end-stage Alzheimer's disease. N Engl J Med 2003;349:1891-1892.
Ahronheim JC, Morrison RS, Baskin SA, Morris J, Meier DE. Treatment of the dying in the acute care hospital: advanced dementia and metastatic cancer. Arch Intern Med 1996;156:2094-2100.
Callahan D. The troubled dream of life: living with mortality. New York: Simon & Schuster, 1993:199-203.
Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000;342:206-210.
Dr. Schulz and colleagues reply: We have no direct data regarding the use of life-prolonging therapies among patients who died in the hospital as compared with those who died elsewhere. However, we found no association between caregivers' reports of patients' pain or relief and the place of death — a result suggesting that suffering was common among all the patients, regardless of where they died.
We fully agree that minimizing suffering should take priority in the care of patients with dementia. As suggested by Dr. Miller and others,1 patients with dementia are rarely enrolled in palliative-care programs. Only three patients in our study used hospice services.
The constituents of comfort care for patients with dementia must be informed by knowledge of the underlying source of suffering. Generalized anxiety and fear of the unknown may, in demented patients, drive suffering behaviors2,3,4 (e.g., grimacing, sighing, and restlessness) that in cognitively intact persons indicate physical pain.5 Until we are able to develop good methods for assessing pain and other forms of suffering, the most appropriate way to alleviate suffering in patients with dementia will remain a guessing game.
Richard Schulz, Ph.D.
Debra Weiner, M.D.
Lynn Martire, Ph.D.
University of Pittsburgh
Pittsburgh, PA 15260
schulz@pitt.edu
References
Hurley AC, Volicer L. Alzheimer disease: "It's okay, Mama, if you want to go, it's okay." JAMA 2002;288:2324-2331.
Ferretti L, McCurry SM, Logsdon R, Gibbons L, Teri L. Anxiety and Alzheimer's disease. J Geriatr Psychiatry Neurol 2001;14:52-58.
Teri L, Ferretti LE, Gibbons LE, et al. Anxiety of Alzheimer's disease: prevalence, and comorbidity. J Gerontol A Biol Sci Med Sci 1999;54:M348-M352.
Tiberti C, Sabe L, Kuzis G, Garcia Cuerva A, Leiguarda R, Starkstein SE. Prevalence and correlates of the catastrophic reaction in Alzheimer's disease. Neurology 1998;50:546-548.
Weiner D, Pieper C, McConnell E, Martinez S, Keefe F. Pain measurement in elders with chronic low back pain: traditional and alternative approaches. Pain 1996;67:461-467.
Franklin G. Miller, Ph.D.
National Institutes of Health
Bethesda, MD 20815
fmiller@nih.gov
References
Schulz R, Mendelsohn AB, Haley WE, et al. End-of-life care and the effects of bereavement on family caregivers of persons with dementia. N Engl J Med 2003;349:1936-1942.
Prigerson HG. Costs to society of family caregiving for patients with end-stage Alzheimer's disease. N Engl J Med 2003;349:1891-1892.
Ahronheim JC, Morrison RS, Baskin SA, Morris J, Meier DE. Treatment of the dying in the acute care hospital: advanced dementia and metastatic cancer. Arch Intern Med 1996;156:2094-2100.
Callahan D. The troubled dream of life: living with mortality. New York: Simon & Schuster, 1993:199-203.
Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000;342:206-210.
Dr. Schulz and colleagues reply: We have no direct data regarding the use of life-prolonging therapies among patients who died in the hospital as compared with those who died elsewhere. However, we found no association between caregivers' reports of patients' pain or relief and the place of death — a result suggesting that suffering was common among all the patients, regardless of where they died.
We fully agree that minimizing suffering should take priority in the care of patients with dementia. As suggested by Dr. Miller and others,1 patients with dementia are rarely enrolled in palliative-care programs. Only three patients in our study used hospice services.
The constituents of comfort care for patients with dementia must be informed by knowledge of the underlying source of suffering. Generalized anxiety and fear of the unknown may, in demented patients, drive suffering behaviors2,3,4 (e.g., grimacing, sighing, and restlessness) that in cognitively intact persons indicate physical pain.5 Until we are able to develop good methods for assessing pain and other forms of suffering, the most appropriate way to alleviate suffering in patients with dementia will remain a guessing game.
Richard Schulz, Ph.D.
Debra Weiner, M.D.
Lynn Martire, Ph.D.
University of Pittsburgh
Pittsburgh, PA 15260
schulz@pitt.edu
References
Hurley AC, Volicer L. Alzheimer disease: "It's okay, Mama, if you want to go, it's okay." JAMA 2002;288:2324-2331.
Ferretti L, McCurry SM, Logsdon R, Gibbons L, Teri L. Anxiety and Alzheimer's disease. J Geriatr Psychiatry Neurol 2001;14:52-58.
Teri L, Ferretti LE, Gibbons LE, et al. Anxiety of Alzheimer's disease: prevalence, and comorbidity. J Gerontol A Biol Sci Med Sci 1999;54:M348-M352.
Tiberti C, Sabe L, Kuzis G, Garcia Cuerva A, Leiguarda R, Starkstein SE. Prevalence and correlates of the catastrophic reaction in Alzheimer's disease. Neurology 1998;50:546-548.
Weiner D, Pieper C, McConnell E, Martinez S, Keefe F. Pain measurement in elders with chronic low back pain: traditional and alternative approaches. Pain 1996;67:461-467.