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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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R. J. Blendon , J. M. Benson M. J. Herrmann (2005), ‘The American public and the Terri Schiavo case’, Archives of Internal Medicine, 165: 25802584.

R. A. Burt (2005), ‘The end of autonomy’, The Hastings Center Report, 35(6): S9S13.

R. Dresser (1995), ‘Dworkin on dementia: elegant theory, questionable policy’, The Hastings Center Report, 25(6): 3238.

N. N. Dubler (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.

J. H. Evans (2006), ‘Religious belief, perceptions of human suffering, and support for reproductive genetic technology’, Journal of Health Politics, Policy and Law, 31(6): 10471074.

T. E. Finucane , C. Christmas B. A. Leff (2007), ‘Tube feeding in dementia: how incentives undermine health care quality and patient safety’, Journal of the American Medical Directors Association, 8(4): 205208.

M. W. Gauderer (1991), ‘Percutaneous endoscopic gastrostomy: a 10-year experience with 220 children’, Journal of Pediatric Surgery, 26(3): 288294.

M. R. Gillick (2000), ‘Rethinking the role of tube feeding in patients with advanced dementia’, New England Journal of Medicine, 342(3): 206210.

Z. C. Hartsell J. S. Williams (2010), ‘Is it ethical to provide enteral tube feedings for patients with dementia?’, Journal of the American Academy of Physician Assistants, 23(10): 5556.

S. Hickman , B. J. Hammes , A. H. Moss S. W. Tolle (2005), ‘Hope for the future: achieving the original intent of advance directives’, Hastings Center Report Special Report, 35(6): S26S30.

T. Hope (2004), Medical Ethics: A Very Short Introduction, Oxford: Oxford University Press.

T. Hope (1992), ‘Advance directives about medical treatment: making up one's mind while one still has a mind’, British Medical Journal, 304(6824): 398.

S. H. Kadish (1992), ‘Letting patients die: legal and moral reflections’, California Law Review, 80: 857888.

A. Meisel , L. Snyder T. Quill (2000), ‘Seven legal barriers to end-of-life care: myths, realities, and grains of truth’, Journal of the American Medical Association, 284(19): 24952501.

S. L. Mitchell , D. K. Kiely , S. C. Miller , S. R. Connor , C. Spence J. M. Teno (2007), ‘Hospice care for patients with dementia’, Journal of Pain and Symptom Management, 34(1): 716.

C. Parsons , C. M. Hughes , A. P. Passmore K. L. Lapane (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.

J. W. Shega , G. W. Hougham , C. B. Stocking , D. Cox-Hayley G. A. Sachs (2003), ‘Barriers to limiting the practice of feeding tube placement in advanced dementia’, Journal of Palliative Medicine, 6(6): 885893.

J. O. Tan , T. Hope A. Stewart (2003), ‘Anorexia nervosa and personal identity: the accounts of patients and their parents’, International Journal of Law and Psychiatry, 26(5): 533548.

J. M. Teno , S. L. Mitchell , P. L. Gozalo , D. Dosa , A. Hsu , O. Intrator V. Mor (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.

J. Vollman (2001), ‘Advance directives in patients with Alzheimer's disease: ethical and clinical considerations’, Medicine, Health Care and Philosophy, 4: 161167.

A. Ho (2008), ‘Relational autonomy or undue pressure? Family's role in medical decision-making’, Scandinavian Journal of Caring Sciences, 22: 128135.

L. M. Murphy T. O. Lipman (2003), ‘Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia’, Archives of Internal Medicine, 163(11): 13511353.

A. Bayer (2007), ‘Death with dementia – the need for better care’, Age and Ageing, 35(2): 101102.

D. Birch D. Jim (2008), ‘A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia’, Journal of Clinical Nursing, 17: 11441163.

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Health Economics, Policy and Law
  • ISSN: 1744-1331
  • EISSN: 1744-134X
  • URL: /core/journals/health-economics-policy-and-law
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