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

Published online by Cambridge University Press:  19 October 2012

Michael Gusmano
Michael Gusmano*
Affiliation:
Associate Professor of Health Policy and Management, New York Medical College, New York, USA
*
*Correspondence to: Michael Gusmano, Associate Professor of Health Policy and Management, New York Medical College, 515 Munger Hall, Valhalla, NY 10595, USA. Email: Michael_Gusmano@nymc.edu
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Abstract

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.

Type
Articles
Information
Health Economics, Policy and Law , Volume 7 , Issue 4 , October 2012 , pp. 485 - 498
Copyright
Copyright © Cambridge University Press 2012

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References

Alzheimer's Association (2010), Alzheimer's Disease: Facts and Figures, Chicago: Alzheimer's Association.Google Scholar
Bartlett, L., Rehder, K. (2010), ‘Ventilators, Feeding Tubes, and other End-Of-Life Questions’, http://www.lutheransforlife.org/article/ventilators-feeding-tubes-and-other-end-of-life-questions [30 November 2010].Google Scholar
Bayer, A. (2007), ‘Death with dementia – the need for better care’, Age and Ageing, 35(2): 101–102.CrossRefGoogle Scholar
Beauchamp, T. L.Childress, J. F. (2001), ‘Respect for Autonomy’, (Ch. 3), in Principles of Biomedical Ethics, 5th edition, Oxford: Oxford University Press, 57–112.Google Scholar
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: 1144–1163.CrossRefGoogle Scholar
Blendon, R. J., Benson, J. M.Herrmann, M. J. (2005), ‘The American public and the Terri Schiavo case’, Archives of Internal Medicine, 165: 2580–2584.CrossRefGoogle Scholar
Burt, R. A. (2005), ‘The end of autonomy’, The Hastings Center Report, 35(6): S9–S13.CrossRefGoogle Scholar
Butler, R. N. (2008), The Longevity Revolution: The Benefits and Challenges of Living a Long Life, New York: Public Affairs.Google Scholar
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, 109–123.Google Scholar
Capron, A. (2010), ‘Rethinking Human Research Protections’, The Henry Knowles Beecher Award Lecture, The Century Club, New York, NY, December 2.Google Scholar
Dresser, R. (1995), ‘Dworkin on dementia: elegant theory, questionable policy’, The Hastings Center Report, 25(6): 32–38.CrossRefGoogle Scholar
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): S19–S25.CrossRefGoogle Scholar
Dworkin, R. (1993), Life's Dominion: An Argument about Abortion, Euthanasia and Individual Freedom, New York: Alfred A. Knopf.Google Scholar
Dychtwald, K. (1999), Healthy Aging: Challenges and Solutions, Aspen: An Aspen Publication.Google Scholar
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): 1047–1074.CrossRefGoogle Scholar
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): 205–208.CrossRefGoogle Scholar
Gauderer, M. W. (1991), ‘Percutaneous endoscopic gastrostomy: a 10-year experience with 220 children’, Journal of Pediatric Surgery, 26(3): 288–294.CrossRefGoogle Scholar
Gillick, M. R. (2000), ‘Rethinking the role of tube feeding in patients with advanced dementia’, New England Journal of Medicine, 342(3): 206–210.CrossRefGoogle Scholar
Guglielmo, W. J. (2010), ‘Exclusive Ethics Survey: “Doctor, Will You Help Me Die?” ’, Medscape Medical Ethics, http://www.medscape.com/viewarticle/732894 [2 October 2012].Google Scholar
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): 55–56.CrossRefGoogle Scholar
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): S26–S30.CrossRefGoogle Scholar
Ho, A. (2008), ‘Relational autonomy or undue pressure? Family's role in medical decision-making’, Scandinavian Journal of Caring Sciences, 22: 128–135.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Hope, T. (2004), Medical Ethics: A Very Short Introduction, Oxford: Oxford University Press.CrossRefGoogle Scholar
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.Google ScholarPubMed
Kadish, S. H. (1992), ‘Letting patients die: legal and moral reflections’, California Law Review, 80: 857–888.CrossRefGoogle Scholar
Kramer, P. D. (1993), Listening to Prozac, New York: Viking.Google Scholar
Li, I. (2002), ‘Feeding tubes in patients with severe dementia’, American Family Physician, 65(8): 1605–1611.Google Scholar
Meier, D., Lim, B.Carlson, M. D. A. (2009), ‘Raising the standard: palliative care in nursing homes’, Health Affairs, 29(1): 138–140.Google Scholar
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): 2495–2501.CrossRefGoogle Scholar
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): 7–16.CrossRefGoogle Scholar
Murphy, L. M.Lipman, T. O. (2003), ‘Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia’, Archives of Internal Medicine, 163(11): 1351–1353.CrossRefGoogle ScholarPubMed
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, 21–32.Google Scholar
Parens, E., Johnston, J. (2011), ‘As Tests to Predict Alzheimer's Emerge, So May Debates Over the Right to Die’, http://healthland.time.com/2011/06/08/as-tests-better-predict-alzheimers-patients-may-contemplate-their-right-to-die/#ixzz1qSl9JbfF http://healthland.time.com/2011/06/08/as-tests-better-predict-alzheimers-patients-may-contemplate-their-right-to-die/ [28 March 2012].Google Scholar
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): 445–449.CrossRefGoogle Scholar
Quill, T. E. (2008), ‘Physician-assisted death in the United States: are the existing ‘last resorts’ enough?’, The Hastings Center Report, 38(5): 137–142.Google Scholar
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): 81–87.Google Scholar
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): 885–893.CrossRefGoogle Scholar
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): 533–548.CrossRefGoogle Scholar
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): 544–550.CrossRefGoogle Scholar
The President's Council on Bioethics (2005), Taking Care: Ethical Caregiving in Our Aging Society, Washington, DC: The President's Council on Bioethics.Google Scholar
Vollman, J. (2001), ‘Advance directives in patients with Alzheimer's disease: ethical and clinical considerations’, Medicine, Health Care and Philosophy, 4: 161–167.CrossRefGoogle Scholar