Caregiving at the End of Life

  • John G. BruhnEmail author
  • Howard M. Rebach
Part of the Clinical Sociology: Research and Practice book series (CSRP)


The majority of Americans (60–70 %) die in a hospital where the culture is oriented around prolonging life and curing disease. Also, hospitals are costly. Nonetheless, many people want to control the way death happens for themselves and their loved ones. Hospice is growing in its use among the public and among physicians, but only 25 % of Americans who died in 2000 were under hospice care at the time of death. The average length of time patients remain in hospice care is about 3 weeks, too short to experience the array of services available for their care. Caregiving at the end of life can follow one of three trajectories. Some patients die suddenly, others experience a steady decline, and others have a long period of illness, interspersed by crises, one of which proves fatal. The demands on family caregivers differ in duration and intensity. Sometimes a caregiver’s adaptability is taxed to the degree that they become ill and even die before the person whom they are caring for. Caregivers experience both positive and negative effects of caregiving. Preventing caregiver burnout or compassion fatigue are common experiences of caregivers. Signs and symptoms of burnout are offered to minimize burnout. The process of grieving and healing from long-term caregiving takes time.


Palliative care Physician’s views and use of hospice Positive effects of caregiving Men as caregivers Caregiving burnout 


  1. Albom, M. (1997). Tuesdays with Morrie. New York: Doubleday.Google Scholar
  2. Arber, S., & Gilbert, N. (1989). Transitions in caring: Gender, life course and the care of the elderly. In B. Bytheway, T. Keil, P. Allout, & B. Bytheway (Eds.), Becoming and being old (pp. 72–92). London: Sage.Google Scholar
  3. Baker, K. L., & Robertson, N. (2008). Coping with caring for someone with dementia: Reviewing the literature about men. Aging & Mental Health, 12(4), 413–422.CrossRefGoogle Scholar
  4. Bradley, E. H., Cramer, L. D., Bogardus, S. T., Kasl, S. V., Johnson-Hurzeler, R., & Horowitz, S. M. (2002). Physicians’ ratings of their knowledge, attitudes and end-of-life care practices. Academic Medicine, 77(4), 305–311.CrossRefGoogle Scholar
  5. Brumley, R., Enguidanos, S., Jamison, P., Seitz, R., Morgenstern, N., Saito, S., McIlwane, J., Hillary, K., & Gonzalez, J. (2007). Increased satisfaction with care and lower costs: Results of a randomized trial of in-home palliative care. Journal of the American Geriatric Society, 55(7), 993–1000.CrossRefGoogle Scholar
  6. Buchwald, A. (2006). Too soon to say goodbye. New York: Random House.Google Scholar
  7. Bumagin, V. E., & Hirn, K. F. (2001). Caregiving: A guide for those who give care and those who receive it. New York: Springer.Google Scholar
  8. Byock, I. (2012). The best care possible. New York: Avery.Google Scholar
  9. Carter, R. (1994). Helping yourself help others: A book for caregivers. New York: Times Books.Google Scholar
  10. Crossroads hospice. (2011). Are physicians and consumers on the same page about hospice?
  11. Field, M. J., & Cassel, C. K. (Eds.). (1997). Approaching death: Improving care at the end of life. Washington, D.C.: National Academy Press.Google Scholar
  12. Flory, J., Young-Xu, Y., Gurol, I., Levinsky, N., Ash, A., & Emanuel, E. (2004). Place of death: U.S. trends since 1980. Health Affairs, 23(3), 194–200.CrossRefGoogle Scholar
  13. Fromme, E. K., Drach, L. L., Tolle, S. W., Ebert, P., Miller, P., Perrin, N., & Tilden, V. P. (2005). Men as caregivers at the end of life. Journal of Palliative Medicine, 8(6), 1167–1175.CrossRefGoogle Scholar
  14. Han, B., Remsburg, R. E., McAuley, W. J., Keay, T. J., & Travis, S. S. (2006). National trends in adult hospice use: 1991–1992 to 1999–2000. Health Affairs, 25(3), 792–799.CrossRefGoogle Scholar
  15. Hooyman, N. R., & Kramer, B. J. (2006). Living through loss: Interventions across the life span. New York: Columbia University Press.Google Scholar
  16. Kaufman, S. R. (2005). …And a time to die: How American hospitals shape the end of life. Chicago: University of Chicago Press.Google Scholar
  17. Kramer, B. J., & Thompson, E. H. (Eds.). (2002). Men as caregivers. New York: Prometheus Books.Google Scholar
  18. Kübler-Ross, E. (1973). Death: The final stage of growth. Englewood Cliffs: Prentice-Hall.Google Scholar
  19. Liao, S., & Arnold, R. M. (2007). Heart failure and the future of palliative medicine. Journal of Palliative Medicine, 10(1), 184.CrossRefGoogle Scholar
  20. Lynn J. (2005). Living long in fragile health: The new demographics shape end-of-life care. Improving end of life care: Why has it been so difficult? Hastings Center Report Special Report 35, no. 6 (2005) S14–S18.Google Scholar
  21. Martin, T. L., & Doka, K. J. (2000). Men don’t cry…women do. Philadelphia: Brunner/Mazel.Google Scholar
  22. McLeod, B. W. (1999). Caregiving: The spiritual journey of love, loss, and renewal. New York: Wiley.Google Scholar
  23. Morrison, R. S., Pewrod, J. D., Cassel, J. B., et al. (2008). Cost savings associated with United States hospital palliative care consultation programs. Archives of Internal Medicine, 168(16), 1783–1790.CrossRefGoogle Scholar
  24. National Hospice and Palliative Care Organization (NHPCO). (2010). NHPCO facts and figures: Hospice care in America (2010 Edn.). Alexandria: NHPCO.Google Scholar
  25. National Institute on Aging. (2008). End of life: Helping with comfort and care. Bethesda: National Institutes of Health, U.S. Department of Health and Human Services, NIH Publication No. 08-6036, January.Google Scholar
  26. National Institutes of Health. (2006). National Institutes of Health State-of-the-Science Conference: Statement on improving end-of-life care. December 6–8, November 4, 2006.
  27. Neufeld, M. J. (1998). Men as caregivers: Reciprocal relationships. Journal of Advanced Nursing, 28(5), 959–968.CrossRefGoogle Scholar
  28. Nuland, S. B. (1993). How we die: Reflections on life’s final chapter. New York: Alfred Knopf, Inc.Google Scholar
  29. Rabow, M. W., Hauser, J. M., & Adams, J. (2004). Supporting family caregivers at the end of life “They don’t know what they don’t know.”. Journal of the American Medical Association, 291(4), 483–491.CrossRefGoogle Scholar
  30. Russell, R. (2001). In sickness and in health: A qualitative study of elderly men who care for their wives with dementia. Journal of Aging Studies, 15, 351–367.CrossRefGoogle Scholar
  31. Sanders, S., & Power, J. (2009). Roles, responsibilities, and relationships among older husbands caring for wives with progressive dementia and other chronic conditions. Health & Social Work, 14(1), 41–51.CrossRefGoogle Scholar
  32. Schulz, R., Mendelsohn, A. B., Haley, W. E., Mahoney, D., Allen, R. S., Zhang, S., Thompson, L., & Belle, S. H. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. New England Journal of Medicine, 349, 1936–1942.CrossRefGoogle Scholar
  33. Strom, K. M. (2000). A caregiver’s survival guide: How to stay healthy when your loved one is sick. Downers Grove: Intervarsity Press.Google Scholar
  34. Tada, Y., MacCallum, R. G., McGuire, L., & Kiecolt-Glaser, J. K. (2001). Long-term caregiving: What happens when it ends? Journal of Abnormal Psychology, 110(4), 573–584.CrossRefGoogle Scholar
  35. Ternel, J. S., Greer, J. A., Muzinkansky, A., et al. (2010). Early palliative care for patients with metastatic non-small cell lung cancer. New England Journal of Medicine, 363(8), 733–742.CrossRefGoogle Scholar
  36. USA Inc. (2011). A basic summary of America’s financial statements. February, 2011. or
  37. Virnig, B. A., McBean, M., Kind, S., & Rishi, B. A. (2002). Hospice use before death: Variability among cancer diagnoses. Medical Care, 40(1), 73–78.CrossRefGoogle Scholar
  38. Watson, S. (2010). The forgotten man: Men as caregivers. Momentum, Fall, 58–59.Google Scholar
  39. Wayne, M., Robinson, L., & Segal, J. (2012). End stage and end-of-life care: Caregiving in the final stages of life.
  40. Webb, M. (1997). The good death: The new American search to reshape the end of life. New York: Bantam Books.Google Scholar
  41. Weitzen, S., Teno, J. M., Fennell, M., et al. (2003). Factors associated with site of death: A national study of where people die. Medical Care, 41, 323–335.Google Scholar
  42. Zhang, B., Nilsson, M. E., & Prigerson, H. G. (2012). Factors important to patients’ quality of life at the end of life. Archives of Internal Medicine, 172(15), 1133–1142.CrossRefGoogle Scholar
  43. Zhang, B., Wright, A. A., Huskamp, H. A., Nilsson, M. S., Maciejewski, M. L., Earle, C. C., Block, S. D., Maciejewski, P. K., & Prigerson, H. G. (2009). Health care costs in the last week of life: Associations with conversations. Archives of Internal Medicine, 169(5), 480–488.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2014

Authors and Affiliations

  1. 1.Department of SociologyNorthern Arizona UniversityFlagstaffUSA
  2. 2.Department of SociologyUniversity of MarylandPrincess AnneUSA

Personalised recommendations