Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-11-17T18:38:31.909Z Has data issue: false hasContentIssue false
  • English
  • Français

At the crossroads: Making the transition to hospice

Published online by Cambridge University Press:  19 July 2005

DENA SCHULMAN-GREEN ,
RUTH McCORKLE ,
LESLIE CURRY ,
EMILY CHERLIN ,
R. JOHNSON-HURZELER  and
ELIZABETH BRADLEY
DENA SCHULMAN-GREEN
Affiliation:
School of Nursing, Center for Excellence in Chronic Illness Care, Yale University, New Haven, Connecticut
RUTH McCORKLE
Affiliation:
School of Nursing, Center for Excellence in Chronic Illness Care, Yale University, New Haven, Connecticut
LESLIE CURRY
Affiliation:
Center on Aging, University of Connecticut Health Center, Farmington, Connecticut
EMILY CHERLIN
Affiliation:
Department of Epidemiology and Public Health, School of Medicine, Yale University, New Haven, Connecticut
R. JOHNSON-HURZELER
Affiliation:
The Connecticut Hospice and John D. Thompson Institute for Training, Education, and Research, Inc., Branford, Connecticut
ELIZABETH BRADLEY
Affiliation:
Department of Epidemiology and Public Health, School of Medicine, Yale University, New Haven, Connecticut
Get access Rights & Permissions [Opens in a new window]

Abstract

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.

Keywords

HospiceCaregivingCancerEnd-of-life care
Type
Research Article
Information
Palliative & Supportive Care , Volume 2 , Issue 4 , December 2004 , pp. 351 - 360
Copyright
© 2004 Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

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, 20–26.Google Scholar
Bradley, E.H., Prigerson, H., Cherlin, E., et al. (2002). Delayed hospice enrollment and caregiver well being. The Gerontologist, 254, 254.Google Scholar
Christakis, N.A. (1994). Timing of referral of terminally ill patients to an outpatient hospice. Journal of General Internal Medicine, 9, 314–320.Google Scholar
Christakis, N.A. & Escarce, J.J. (1996). Survival of Medicare patients after enrollment in hospice programs. The New England Journal of Medicine, 335, 172–178.Google Scholar
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, 35–38.Google Scholar
Farmon, C. & Hofmann, M. (1997). Factors contributing to late hospice admission and proposals for change. The American Journal of Hospice and Palliative Care, 14, 212–218.Google Scholar
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, 449–454.Google Scholar
Friedman, B.T., Harwood, K., & Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of Palliative Medicine, 5, 73–84.Google Scholar
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, 25–53.Google Scholar
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, 1339–1344.Google Scholar
Hewitt-Taylor, J. (2001). Use of constant comparative analysis in qualitative research. Nursing Standard, 15, 39–42.Google Scholar
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, 269–289.Google Scholar
Lynn, J. & Goldstein, N.E. (2003). Advance care planning for fatal chronic illness: Avoiding commonplace errors and unwarranted suffering. Annals of Internal Medicine, 138, 812–818.Google Scholar
Lynn, J., Teno, J.M., & Harrell, F.E., Jr. (1995). Accurate prognostications of death: Opportunities and challenges for clinicians. Western Journal of Medicine, 163, 250–257.Google Scholar
McCorkle, R. & Pasacreta, J. (2001). Enhancing caregiver outcomes in palliative care. Cancer Control, 8, 36–45.Google Scholar
Miyaji, N.T. (2002). The power of compassion: Truth-telling among American doctors in the care of dying patients. Social Science and Medicine, 36, 249–264.Google Scholar
Naik, A. & DeHaven, M.J. (2001). Short stays in hospice: A review and update. Caring Magazine, 10–13.Google Scholar
Northouse, L. (1984). The impact of cancer on the family: An overview. International Journal of Psychiatric Medicine, 14, 215–243.Google Scholar
Patton, M.Q. (2002). Two decades of developments in qualitative inquiry: A personal, experiential perspective. Qualitative Social Work, 1, 261–284.Google Scholar
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. 492–511. 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, 64–70.Google Scholar
Seale, C. (1991). Communication and awareness about death: A study of a random sample of dying people. Social Science and Medicine, 32, 943–953.Google Scholar
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, 1591–1599.Google Scholar
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, 38–42.Google Scholar