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At the crossroads: Making the transition to hospice



Objective: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice declined 27%, from 26 to 19 days. In our prior study of 206 patients diagnosed with terminal cancer and using hospice, we found that one-third enrolled with hospice within 1 week prior to death. Late hospice enrollment can have deleterious effects on patients and their family members. The aim of the present study was to characterize common experiences of patients and primary family caregivers as they transition to hospice, focusing on caregiver perceptions of factors that might contribute to delays in hospice enrollment.

Methods: We conducted in-depth interviews with a purposive sample of 12 caregivers selected from a population of primary family caregivers of patients with terminal cancer who enrolled with hospice in Connecticut between September 2000 and September 2001. Respondents represented different ages, genders, and kinship relationships with patients. Respondents were asked about the patient's care trajectory, how they first learned about hospice, and their experiences as they transitioned to hospice. NUD*IST software was used for qualitative data coding and analysis.

Results: Constant comparative analysis identified three themes common to the experience of transitioning to hospice: (1) caregivers' acceptance of the impending death, (2) challenges in negotiating the health care system across the continuum of care, and (3) changing patient–family dynamics.

Significance of results: Identification of these themes from the caregivers' perspective generates hypotheses about potential delays in hospice and may ultimately be useful in the design of interventions that are consistent with caregivers' needs.


Corresponding author

Corresponding author: Elizabeth Bradley, Ph.D., Yale University School of Medicine, Department of Epidemiology and Public Health, 60 College Street, P.O. Box 208034, New Haven, CT 06520-8034, USA. E-mail:


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Bradley, E.H., Fried, T.R., Kasl, S.V., et al. (2000). Referral of terminally ill patients for hospice: Frequency and correlates. Journal of Palliative Care, 16, 2026.
Bradley, E.H., Prigerson, H., Cherlin, E., et al. (2002). Delayed hospice enrollment and caregiver well being. The Gerontologist, 254, 254.
Christakis, N.A. (1994). Timing of referral of terminally ill patients to an outpatient hospice. Journal of General Internal Medicine, 9, 314320.
Christakis, N.A. & Escarce, J.J. (1996). Survival of Medicare patients after enrollment in hospice programs. The New England Journal of Medicine, 335, 172178.
Crabtree, B.F. & Miller, W.L. (1999). Doing Qualitative Research (2nd ed.). Thousand Oaks, CA: Sage Publications.
Emanuel, L.L. (1995). Advance directives: Do they work? Journal of the American College of Cardiology, 25, 3538.
Farmon, C. & Hofmann, M. (1997). Factors contributing to late hospice admission and proposals for change. The American Journal of Hospice and Palliative Care, 14, 212218.
Frantz, T.T., Lawrence, J.C., Somov, P.G., et al. (1999). Factors in hospice patients' length of stay. The American Journal of Hospice and Palliative Care, 16, 449454.
Friedman, B.T., Harwood, K., & Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of Palliative Medicine, 5, 7384.
General Accounting Office (2000). More beneficiaries use hospice but for fewer days of care. Report to Congressional Requesters. Washington, DC: United States General Accounting Office.
Glaser, B. & Strauss, A. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine.
Gochman, D.S. & Bonham, G.S. (1988). Physicians and the hospice decision: Awareness, discussion, reasons, and satisfaction. The Hospice Journal, 4, 2553.
Hanson, L.C., Danis, M., & Garrett, J. (1997). What is wrong with end-of-life care? Opinions of bereaved family members. Journal of the American Geriatrics Society, 45, 13391344.
Hewitt-Taylor, J. (2001). Use of constant comparative analysis in qualitative research. Nursing Standard, 15, 3942.
Institute of Medicine (1997). Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press.
Lewis, F.M. (1986). The impact of cancer on the family: A critical analysis of the research literature. Patient Education and Counseling, 8, 269289.
Lynn, J. & Goldstein, N.E. (2003). Advance care planning for fatal chronic illness: Avoiding commonplace errors and unwarranted suffering. Annals of Internal Medicine, 138, 812818.
Lynn, J., Teno, J.M., & Harrell, F.E., Jr. (1995). Accurate prognostications of death: Opportunities and challenges for clinicians. Western Journal of Medicine, 163, 250257.
McCorkle, R. & Pasacreta, J. (2001). Enhancing caregiver outcomes in palliative care. Cancer Control, 8, 3645.
Miyaji, N.T. (2002). The power of compassion: Truth-telling among American doctors in the care of dying patients. Social Science and Medicine, 36, 249264.
Naik, A. & DeHaven, M.J. (2001). Short stays in hospice: A review and update. Caring Magazine, 1013.
Northouse, L. (1984). The impact of cancer on the family: An overview. International Journal of Psychiatric Medicine, 14, 215243.
Patton, M.Q. (2002). Two decades of developments in qualitative inquiry: A personal, experiential perspective. Qualitative Social Work, 1, 261284.
Rolland, J.S. (1999). Chronic illness and the family life cycle. In The Expanded Family Life Cycle: Individual, Family and Social Perspectives (3rd ed.), Carter, B. and McGoldrick, M. (eds.), pp. 492511. Boston, MA: Allyn & Bacon.
Schulman-Green, D., Bradley, E.H., Cherlin, E., et al. (2005). Nurses' communication of prognosis and implications for hospice referral. American Journal of Critical Care, 14, 6470.
Seale, C. (1991). Communication and awareness about death: A study of a random sample of dying people. Social Science and Medicine, 32, 943953.
SUPPORT Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatment. Journal of the American Medical Association, 274, 15911599.
von Gunten, C.F., Von Roenn, J.H., Neely, K.J., et al. (1995). Hospice and palliative care: Attitudes and practices of the physician faculty of an academic hospital. The American Journal of Hospice and Palliative Care, 12, 3842.


At the crossroads: Making the transition to hospice



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