Journal of General Internal Medicine

, Volume 19, Issue 10, pp 1057–1063 | Cite as

Barriers to excellent end-of-life care for patients with dementia

  • Greg A. Sachs
  • Joseph W. Shega
  • Deon Cox-Hayley


While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.

Key words

palliative care end-of-life care dementia Alzheimer’s disease hospice 


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    McPhee SJ, Rabow MW, Pantilat SZ, Markowitz AJ, Winker MA. Finding our way—perspectives on care at the close of life. JAMA. 2000;284:2512–3.PubMedCrossRefGoogle Scholar
  2. 2.
    Lo B, Snyder L, Sox HC. Care at the end of life: guiding practice where there are no easy answers. Ann Intern Med. 1999;130:772–4.PubMedGoogle Scholar
  3. 3.
    Office of Academic Affiliations, Veterans Health Administration. Available at: Accessed August 14, 2003.Google Scholar
  4. 4.
    The Robert Wood Johnson Foundation. Promoting Excellence in End-of-life Care. Available at: Accessed August 14, 2003.Google Scholar
  5. 5.
    Project on Death in America. Transforming the Culture of Dying. Available at: Accessed August 14, 2003.Google Scholar
  6. 6.
    Teno JM, Mor V, Desilva D, Kabumoto G, Roy J, Wetle T. Use of feeding tubes in nursing home residents with severe cognitive impairment. JAMA. 2002;287:3211–2.PubMedCrossRefGoogle Scholar
  7. 7.
    Ahronheim JC, Mulvihill M, Sieger C, Park P, Fries BE. State variations in the use of tube feeding for nursing home residents with severe cognitive impairment. J Am Geriatr Soc. 2001;49:148–52.PubMedCrossRefGoogle Scholar
  8. 8.
    Mitchell SL, Teno JM, Roy J, Kabumoto G, Mor V. Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA. 2003;290:73–80.PubMedCrossRefGoogle Scholar
  9. 9.
    Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med. 2000;342:206–10.PubMedCrossRefGoogle Scholar
  10. 10.
    Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia. JAMA. 1999;282:1365–70.PubMedCrossRefGoogle Scholar
  11. 11.
    Teno JM. Persistent pain in nursing home residents. JAMA. 2001;285:2081.PubMedCrossRefGoogle Scholar
  12. 12.
    National Hospice and Palliative Care Organization. NHPCO’s Facts and Figures on Hospice and Palliative Care. Available at: Accessed August 14, 2003.Google Scholar
  13. 13.
    Ewbank DC. Deaths attributable to Alzheimer’s disease in the United States. Am J Public Health. 1999;89:90–2.PubMedGoogle Scholar
  14. 14.
    Kawas CH, Brookmeyer R. Aging and the public health effects of dementia. N Engl J Med. 2001;344:1160–1.PubMedCrossRefGoogle Scholar
  15. 15.
    Davis MP, Walsh D, LeGrand SB, Lagman R. End-of-life care: the death of palliative medicine? J Palliat Med. 2002;5:813–4.PubMedCrossRefGoogle Scholar
  16. 16.
    National Center for Health Statistics. Highlights of a New Report from the National Center for Health Statistics (NCHS) Mortality Trends for Alzheimer’s Disease. Available at: Accessed August 14, 2003.Google Scholar
  17. 17.
    Kammoun S, Gold G, Bouras C, et al. Immediate causes of death of demented and non-demented elderly. Acta Neurol Scand. 2000;(suppl);96–9.Google Scholar
  18. 18.
    Ganguli M, Rodriguez EG. Reporting of dementia on death certificates: a community study. J Am Geriatr Soc. 1999;47:842–9.PubMedGoogle Scholar
  19. 19.
    Burns A, Jacoby R, Luthert P, Levy R. Cause of death in Alzheimer’s disease. Age Ageing. 1990;19:341–4.PubMedCrossRefGoogle Scholar
  20. 20.
    Shega JW, Levin A, Hougham GW, et al. Palliative Excellence in Alzheimer Care Efforts (PEACE): a program description. J Palliat Med. 2003;6:315–20.PubMedCrossRefGoogle Scholar
  21. 21.
    Wolfson C, Wolfson DB, Asgharian M, et al. A reevaluation of the duration of survival after the onset of dementia. N Engl J Med. 2001;344:1111–6.PubMedCrossRefGoogle Scholar
  22. 22.
    Walsh JS, Welch HG, Larson EB. Survival of outpatients with Alzheimer-type dementia. Ann Intern Med. 1990;113:429–34.PubMedGoogle Scholar
  23. 23.
    Reisberg B, Doody R, Stoffler A, Schmitt F, Ferris S, Mobius HJ. Memantine in moderate-to-severe Alzheimer’s disease. N Engl J Med. 2003;348:1333–41.PubMedCrossRefGoogle Scholar
  24. 24.
    Michel J-P, Pautex S, Zekry D, Zulian G, Gold G. End-of-life care of persons with dementia. J Gerontol. 2002;57A:M640-M644.Google Scholar
  25. 25.
    Helmes E, Merskey H, Fox H, Fry RN, Bowler JV, Hachinski VC. Patterns of deterioration in senile dementia of the Alzheimer type. Arch Neurol. 1995;52:306–10.PubMedGoogle Scholar
  26. 26.
    Volicer L, Hurley AC. Hospice Care for Patients with Advanced Progressive Dementia. New York, NY: Springer; 1998.Google Scholar
  27. 27.
    Field MJ, Cassel CK, eds. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press; 2003.Google Scholar
  28. 28.
    Lynn J. Serving patients who may die soon and their families: the role of hospice and other services. JAMA. 2001;285:925–32.PubMedCrossRefGoogle Scholar
  29. 29.
    Stuart B. The NHO medical guidelines for non-cancer disease and local medical review policy: hospice access for patients with diseases other than cancer. Hosp J. 1999;14:139–54.PubMedCrossRefGoogle Scholar
  30. 30.
    Luchins DJ, Hanrahan P, Murphy K. Criteria for enrolling dementia patients in hospice. J Am Geriatr Soc. 1997;45:1054–9.PubMedGoogle Scholar
  31. 31.
    Hanrahan P, Raymond M, McGowan E, Luchins D. Criteria for enrolling patients in hospice: a replication. Am J Hosp Palliat Care. 1999;16:395–400.PubMedCrossRefGoogle Scholar
  32. 32.
    Schonwetter RS, Han B, Small BJ, Martin B, Tope K, Haley WE. Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines. Am J Hosp Palliat Care. 2003;20:105–13.PubMedCrossRefGoogle Scholar
  33. 33.
    Christakis NA, Escarce JJ. Survival of Medicare patients after enrollment in hospice programs. N Engl J Med. 1996;335:172–8.PubMedCrossRefGoogle Scholar
  34. 34.
    Albert SM, Costa R, Merchant C, Small S, Jenders RA, Stern Y. Hospitalization and Alzheimer’s disease: results from a community-based study. J Gerontol A Biol Sci Med Sci. 1999;54:M267-M271.PubMedGoogle Scholar
  35. 35.
    Sands LP, Yaffe K, Lui LY, Stewart A, Eng C, Covinsky K. The effects of acute illness on ADL decline over 1 year in frail older adults with and without cognitive impairment. J Gerontol A Biol Sci Med Sci. 2002;57:M449-M454.PubMedGoogle Scholar
  36. 36.
    Fabiszewski KJ, Volicer B, Volicer L. Effect of antibiotic treatment on outcome of fevers in institutionalized Alzheimer patients. JAMA. 1990;263:3168–72.PubMedCrossRefGoogle Scholar
  37. 37.
    von Gunten CF, Ferris FD, Emanuel LL. Ensuring competency in end-of-life care: communication and relational skills. JAMA. 2000;284:3051–7.CrossRefGoogle Scholar
  38. 38.
    AGS Panel on Persistent Pain in Older Persons. The management of persistent pain in older persons. J Am Geriatr Soc. 2002;50:1–20.Google Scholar
  39. 39.
    Cohen-Mansfield J, Billig N, Lipson S, Rosenthal AS, Pawlson LG. Medical correlates of agitation in nursing home residents. Gerontology. 1990;36:150–8.PubMedCrossRefGoogle Scholar
  40. 40.
    Weiner D, Kerr H, Rudy T, eds. Persistent Pain in Older Adults: An Interdisciplinary Guide for Treatment. New York, NY: Springer Publishing Company; 2002.Google Scholar
  41. 41.
    Tariot PN, Ryan JM, Porsteinsson AP, Loy R, Schneider LS. Pharmacologic therapy for behavioral symptoms of Alzheimer’s disease. Clin Geriatr Med. 2001;17:359–76.PubMedCrossRefGoogle Scholar
  42. 42.
    Cohen-Mansfield J. Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary, and critique. Am J Geriatr Psychiatry. 2001;9:361–81.PubMedCrossRefGoogle Scholar
  43. 43.
    Schulz R, Beach SR. Caregiving as a risk factor for mortality: the caregiver health effects. JAMA. 1999;282:2215–9.PubMedCrossRefGoogle Scholar
  44. 44.
    Ory MG, Hoffman RR, Yee JL, Tennstedt S, Schulz R. Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist. 1999;39:177–85.PubMedCrossRefGoogle Scholar
  45. 45.
    Smith GE, Kokman E, O’Brien PC. Risk factors for nursing home placement in a population-based dementia cohort. J Am Geriatr Soc. 2000;48:519–25.PubMedGoogle Scholar
  46. 46.
    Knopman DS, Kitto J, Deinard S, Heiring J. Longitudinal study of death and institutionalization in patients with primary degenerative dementia. J Am Geriatr Soc. 1988;36:108–12.PubMedGoogle Scholar
  47. 47.
    Weitzen S, Teno JM, Fennell M, Mor V. Factors associated with site of death: a national study of where people die. Med Care. 2003;41:323–35.PubMedCrossRefGoogle Scholar
  48. 48.
    Murphy K, Hanrahan P, Luchins D. A survey of grief and bereavement in nursing homes: the importance of hospice grief and bereavement for the end-stage Alzheimer’s disease patient and family. J Am Geriatr Soc. 1997;45:1104–7.PubMedGoogle Scholar
  49. 49.
    Hanrahan P, Luchins DJ. Access to hospice programs in end-stage dementia: a national survey of hospice programs. J Am Geriatr Soc. 1995;43:56–9.PubMedGoogle Scholar
  50. 50.
    The Canadian Study of Health and Aging Working Group. Patterns and health effects of caring for people with dementia: the impact of changing cognitive and residential status. Gerontologist. 2002;42:643–52.Google Scholar
  51. 51.
    Meuser TM, Marwit SJ. A comprehensive, stage-sensitive model of grief in dementia caregiving. Gerontologist. 2001;41:658–70.PubMedGoogle Scholar
  52. 52.
    Department of Health and Human Services Administration on Aging. National Family Caregiver Support Program Resource Room. Available at: Accessed August 14, 2003.Google Scholar
  53. 53.
    Skolnick AA. Medicaring project to demonstrate, evaluate innovative end-of-life program for chronically ill. JAMA. 1998;279:1511–2.PubMedCrossRefGoogle Scholar
  54. 54.
    Moon M. Medicare. N Engl J Med. 2001;344:928–31.PubMedCrossRefGoogle Scholar
  55. 55.
    Sands L, Yaffe K, Covinsky K, et al. Cognitive screening predicts magnitude of functional recovery from admission to 3 months after discharge in hospitalized elders. J Gerontol A Biol Sci Med Sci. 2003;58A:37–45.Google Scholar
  56. 56.
    Lunney J, Lynn J, Foley D, Lipson S, Guralnik J. Patterns of functional decline at the end of life. JAMA. 2003;289:2387–92.PubMedCrossRefGoogle Scholar
  57. 57.
    Huskamp HA, Beeuwkes Buntin M, Wang V, Newhouse J. Providing care at the end of life: do Medicare rules impede good care? Health Aff. 2001;20:204–11.CrossRefGoogle Scholar
  58. 58.
    Mace N, Rabins P. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Later Life. Baltimore, Md: The Johns Hopkins University Press; 1991.Google Scholar
  59. 59.
    Inouye SK, Viscoli CM, Horwitz RI, Hurst LD, Tinetti ME. A predictive model for delirium in hospitalized elderly medical patients based on admission characteristics. Ann Intern Med. 1993;119:474–81.PubMedGoogle Scholar
  60. 60.
    Zerzan J, Stearns S, Hanson L. Access to palliative care and hospice in nursing homes. JAMA. 2000;284:2489–94.PubMedCrossRefGoogle Scholar
  61. 61.
    AGS Ethics Committee. American Geriatrics Society (AGS) Position Statement. Measuring Quality of Care for Nursing Home Residents—Considering Unintended Consequences. Available at: Accessed August 14, 2003.Google Scholar
  62. 62.
    Mezey M, Dubler NN, Mitty E, Brody AA. What impact do settings and transitions have on the quality of life at the end of life and the quality of the dying process? Gerontologist. 2002;42:54–67.PubMedCrossRefGoogle Scholar
  63. 63.
    Levinski NG, Yu W, Ash A, et al. Influence of age on Medicare expenditures and medical care in the last year of life. JAMA. 2001;286:1349–55.CrossRefGoogle Scholar
  64. 64.
    Reisberg B. Functional Assessment Staging (FAST). Psychopharm Bull. 1988;24:653–9.Google Scholar
  65. 65.
    Morrison RS, Siu AL. Survival in end-stage dementia following acute illness. JAMA. 2000;284:47–52.PubMedCrossRefGoogle Scholar
  66. 66.
    Grant MD, Rudberg MA, Brody JA. Gastrostomy placement and mortality among hospitalized Medicare beneficiaries. JAMA. 1998;279:1973–6.PubMedCrossRefGoogle Scholar
  67. 67.
    Volicer L, Rheaume Y, Brown J, Fabiszewski KJ, Brady RJ. Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. JAMA. 1986;256:2210–3.PubMedCrossRefGoogle Scholar
  68. 68.
    Head B. Palliative care for persons with dementia. Home Healthc Nurse. 2003;21:53–60.PubMedCrossRefGoogle Scholar
  69. 69.
    TIME: Toolkit of Instruments to Measure End-of-life Care. Available at: Accessed August 14, 2003.Google Scholar
  70. 70.
    Innovative models and approaches for palliative and end-of-life care. Available at: Accessed August 14, 2003.Google Scholar
  71. 71.
    Lynn J, Wilkinson A, Cohn F, Jones SB. Capitated risk-bearing managed care systems could improve end-of-life care. J Am Geriatr Soc. 1998;46:322–30.PubMedGoogle Scholar

Copyright information

© Society of General Internal Medicine 2004

Authors and Affiliations

  • Greg A. Sachs
    • 1
  • Joseph W. Shega
    • 1
  • Deon Cox-Hayley
    • 1
  1. 1.Department of Medicine, Section of GeriatricsThe University of ChicagoChicago

Personalised recommendations