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End-of-life care for patients with dementia in the United States: institutional realities

  • Michael Gusmano (a1)

Few are satisfied with end-of-life care in the United States. For families and friends of people with dementia, end-of-life care is particularly frustrating. Providing better end-of-life care to people with dementia is urgent because the prevalence of the disease is increasing rapidly. Dementia is currently the seventh leading cause of death in the United States and fifth leading cause of death among people aged 65 years and older. By 2050, there will be around 19 million people with Alzheimer's disease. This article reviews ethical and policy challenges associated with providing end-of-life care for people with dementia in the United States. I explain how disagreements about the meaning of futility lead to poor care for people with dementia. Most people agree that we should not provide care that is futile, but there is little agreement about how futility should be defined. US policies and politics clearly tip the balance in the direction of treatment, even in the face of strong evidence that such care does more harm than good. Although we may never reach a consensus, it is important to address these questions and think about how to develop policies that respect the different values.

Corresponding author
*Correspondence to: Michael Gusmano, Associate Professor of Health Policy and Management, New York Medical College, 515 Munger Hall, Valhalla, NY 10595, USA. Email:
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Alzheimer's Association (2010), Alzheimer's Disease: Facts and Figures, Chicago: Alzheimer's Association.
Bartlett, L., Rehder, K. (2010), ‘Ventilators, Feeding Tubes, and other End-Of-Life Questions’, [30 November 2010].
Bayer, A. (2007), ‘Death with dementia – the need for better care’, Age and Ageing, 35(2): 101102.
Beauchamp, T. L.Childress, J. F. (2001), ‘Respect for Autonomy’, (Ch. 3), in Principles of Biomedical Ethics, 5th edition, Oxford: Oxford University Press, 57112.
Birch, D.Jim, D. (2008), ‘A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia’, Journal of Clinical Nursing, 17: 11441163.
Blendon, R. J., Benson, J. M.Herrmann, M. J. (2005), ‘The American public and the Terri Schiavo case’, Archives of Internal Medicine, 165: 25802584.
Burt, R. A. (2005), ‘The end of autonomy’, The Hastings Center Report, 35(6): S9S13.
Butler, R. N. (2008), The Longevity Revolution: The Benefits and Challenges of Living a Long Life, New York: Public Affairs.
Callahan, D. (1995), ‘Treating People with Dementia: When is it ok to stop?’ (Ch. 8), in E. Olson, E. R. Chichin and L. S. Libow (eds), Controversies in Ethics in Long-Term Care, New York: Springer Publishing Company, 109123.
Capron, A. (2010), ‘Rethinking Human Research Protections’, The Henry Knowles Beecher Award Lecture, The Century Club, New York, NY, December 2.
Dresser, R. (1995), ‘Dworkin on dementia: elegant theory, questionable policy’, The Hastings Center Report, 25(6): 3238.
Dubler, N. N. (2005), ‘ “Conflict and consensus at the end of life” ’. Improving end of life care: why has it been so difficult?’, The Hastings Center Report, 35(6): S19S25.
Dworkin, R. (1993), Life's Dominion: An Argument about Abortion, Euthanasia and Individual Freedom, New York: Alfred A. Knopf.
Dychtwald, K. (1999), Healthy Aging: Challenges and Solutions, Aspen: An Aspen Publication.
Evans, J. H. (2006), ‘Religious belief, perceptions of human suffering, and support for reproductive genetic technology’, Journal of Health Politics, Policy and Law, 31(6): 10471074.
Finucane, T. E., Christmas, C.Leff, B. A. (2007), ‘Tube feeding in dementia: how incentives undermine health care quality and patient safety’, Journal of the American Medical Directors Association, 8(4): 205208.
Gauderer, M. W. (1991), ‘Percutaneous endoscopic gastrostomy: a 10-year experience with 220 children’, Journal of Pediatric Surgery, 26(3): 288294.
Gillick, M. R. (2000), ‘Rethinking the role of tube feeding in patients with advanced dementia’, New England Journal of Medicine, 342(3): 206210.
Guglielmo, W. J. (2010), ‘Exclusive Ethics Survey: “Doctor, Will You Help Me Die?” ’, Medscape Medical Ethics, [2 October 2012].
Hartsell, Z. C.Williams, J. S. (2010), ‘Is it ethical to provide enteral tube feedings for patients with dementia?’, Journal of the American Academy of Physician Assistants, 23(10): 5556.
Hickman, S., Hammes, B. J., Moss, A. H.Tolle, S. W. (2005), ‘Hope for the future: achieving the original intent of advance directives’, Hastings Center Report Special Report, 35(6): S26S30.
Ho, A. (2008), ‘Relational autonomy or undue pressure? Family's role in medical decision-making’, Scandinavian Journal of Caring Sciences, 22: 128135.
Hope, T. (1992), ‘Advance directives about medical treatment: making up one's mind while one still has a mind’, British Medical Journal, 304(6824): 398.
Hope, T. (2004), Medical Ethics: A Very Short Introduction, Oxford: Oxford University Press.
Jennings, B., Kaebnick, G. E.Murray, T. H. (2005), Improving End of Life Care: Why Has It Been So Difficult? A Hastings Center Special Report. Garrison: The Hastings Center.
Kadish, S. H. (1992), ‘Letting patients die: legal and moral reflections’, California Law Review, 80: 857888.
Kramer, P. D. (1993), Listening to Prozac, New York: Viking.
Li, I. (2002), ‘Feeding tubes in patients with severe dementia’, American Family Physician, 65(8): 16051611.
Meier, D., Lim, B.Carlson, M. D. A. (2009), ‘Raising the standard: palliative care in nursing homes’, Health Affairs, 29(1): 138140.
Meisel, A., Snyder, L.Quill, T. (2000), ‘Seven legal barriers to end-of-life care: myths, realities, and grains of truth’, Journal of the American Medical Association, 284(19): 24952501.
Mitchell, S. L., Kiely, D. K., Miller, S. C., Connor, S. R., Spence, C.Teno, J. M. (2007), ‘Hospice care for patients with dementia’, Journal of Pain and Symptom Management, 34(1): 716.
Murphy, L. M.Lipman, T. O. (2003), ‘Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia’, Archives of Internal Medicine, 163(11): 13511353.
Parens, E. (2004), ‘Kramer's Anxiety,’ (Ch. 2), in C. Elliott and T. Chambers (eds), Prozac as a Way of Life, Chapel Hill and London: University of North Carolina Press, 2132.
Parsons, C., Hughes, C. M., Passmore, A. P.Lapane, K. L. (2010), ‘Withholding, discontinuing and withdrawing medications in dementia patients at the end of life: a neglected problem in the disadvantaged dying?’, Drugs Aging, 27(6): 445449.
Quill, T. E. (2008), ‘Physician-assisted death in the United States: are the existing ‘last resorts’ enough?’, The Hastings Center Report, 38(5): 137142.
Saucier, R., Berlinger, N. B., Thomson, N., Gusmano, M. K.Wolfe, D. (2010), ‘The limits of equivalence? Ethical dilemmas in providing care in drug detention centers’, International Journal of Prisoner Health, 6(2): 8187.
Shega, J. W., Hougham, G. W., Stocking, C. B., Cox-Hayley, D.Sachs, G. A. (2003), ‘Barriers to limiting the practice of feeding tube placement in advanced dementia’, Journal of Palliative Medicine, 6(6): 885893.
Tan, J. O., Hope, T.Stewart, A. (2003), ‘Anorexia nervosa and personal identity: the accounts of patients and their parents’, International Journal of Law and Psychiatry, 26(5): 533548.
Teno, J. M., Mitchell, S. L., Gozalo, P. L., Dosa, D., Hsu, A., Intrator, O.Mor, V. (2010), ‘Hospital characteristics associated with feeding tube placement in nursing home residents with advanced cognitive impairment’, Journal of the American Medical Association, 303(6): 544550.
The President's Council on Bioethics (2005), Taking Care: Ethical Caregiving in Our Aging Society, Washington, DC: The President's Council on Bioethics.
Vollman, J. (2001), ‘Advance directives in patients with Alzheimer's disease: ethical and clinical considerations’, Medicine, Health Care and Philosophy, 4: 161167.
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Health Economics, Policy and Law
  • ISSN: 1744-1331
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