The Shift to Early Palliative Care

Elaine Wittenberg-Lyles

Joy Goldsmith

Sandra L. Ragan

palliative care, end-of-life
CJON 2011, 15(3), 304-310. DOI: 10.1188/11.CJON.304-310

For the current study, clinical observations of communication between patients, families, and clinicians during chronic, serious, or terminal illness in a cancer care trajectory were examined for patterns and trends. Five communication characteristics were concluded, which informed a typology of illness journeys experienced by patients with cancer and their families. The isolated journey characterizes an illness path in which communication about terminal prognosis and end-of-life care options are not present; communication is restricted by a curative-only approach to diagnosis as well as the structure of medical care. The rescued journey signifies a transition between curative care (hospital narrative) to noncurative care (hospice narrative), challenging patients and their families with an awareness of dying. The rescued journey allows communication about prognosis and care options, establishes productive experiences through open awareness, and affords patients and families opportunities to experience end-of-life care preferences. Finally, palliative care prior to hospice provides patients and families with an illness journey more readily characterized by open awareness and community, which facilitates a comforted journey. Nurses play a pivotal role in communicating about disease progression and plans of care. The typology presented can inform a structured communication curriculum for nurses and assist in the implementation of early palliative care.

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    Clayton, J.M., Butow, P.N., Arnold, R.M., & Tattersall, M.H. (2005). Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer, 103, 1965-1975. doi: 10.1002/cncr.21011
    Coffey, A., & Atkinson, P. (1996). Making sense of qualitative data analysis: Complementary research strategies. Thousand Oaks, CA: Sage.
    Dalgaard, K.M., Thorsell, G., & Delmar, C. (2010). Identifying transitions in terminal illness trajectories: A critical factor in hospital-based palliative care. International Journal of Palliative Nursing, 16, 87-92.
    Epstein, R.M., Korones, D.N., & Quill, T.E. (2010). Withholding information from patients—When less is more. New England Journal of Medicine, 362, 380-381. doi: 10.1056/NEJMp0911835
    Ferrell, B.R. (2005). Late referrals to palliative care. Journal of Clinical Oncology, 23, 2588-2589. doi: 10.1200/JCO.2005.11.908
    Ferrell, B.R. (2006). Understanding the moral distress of nurses witnessing medically futile care. Oncolgy Nursing Forum, 33, 922-930. doi: 10.1188/06.ONF.922-930
    Ferrell, B.R., & Coyle, N. (2008). The nature of suffering and the goals of nursing. Oncology Nursing Forum, 35, 241-247. doi: 10.1188/08.ONF.241-247
    Gibbins, J., McCourbrie, R., Alexander, N., Kinzel, C., & Forbes, K. (2009). Diagnosing dying in the acute hospital setting—Are we too late? Clinical Medicine, 9, 116-119.
    Glaser, B., & Strauss, A. (1965). Awareness of dying. San Francisco, CA: Aldine.
    Huskamp, H.A., Keating, N.L., Malin, J.L., Zaslavsky, A.M., Weeks, J.C., Earle, C.C., … Ayanian, J.Z. (2009). Discussions with physicians about hospice among patients with metastatic lung cancer. Archives of Internal Medicine, 169, 954-962.
    Johnsen, A.T., Petersen, M.A., Pedersen, L., & Groenvold, M. (2009). Symptoms and problems in a nationally representative sample of advanced cancer patients. Palliative Medicine, 23, 491-501.
    Kagan, P.N. (2008). Listening: Selected perspectives in theory and research. Nursing Science Quarterly, 21, 105-110.
    Kennedy-Sheldon, L., Barrett, R., & Ellington, L. (2006). Difficult communication in nursing. Journal of Nursing Scholarship, 38, 141-147. doi: 10.1111/j.1547-5069.2006.00091.x
    Lorenz, K.A., Asch, S.M., Rosenfeld, K.E., Lin, H., & Ettner, S.L. (2004). Hospice admission practices: Where does hospice fit in the continuum of care? Journal of the American Geriatric Society, 52, 725-730. doi: 10.1111/j.1532-5415.2004.52209.x
    Malloy, P., Virani, R., Kelly, K., & Munévar, C. (2010). Beyond bad news: Communication skills of nurses in palliative care. Journal of Hospice and Palliative Nursing, 12, 166-174.
    Matsuyama, R., Reddy, S., & Smith, T.J. (2006). Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. Journal of Clinical Oncology, 24, 3490-3496. doi: 10.1200/JCO.2005.03.6236
    Meier, D.E. (2009, August). Fact versus fiction: Key issues in health care reform. Paper presented at Health Affairs Holds a Conference on Key Issues in Health Reform, Washington, DC.
    National Family Caregivers Association. (2010). The NFCA story project: Meet some family caregivers. Retrieved from
    Nielsen-Bohlman, L., Panzer, A.M., Kindig, D.A. (Eds.). (2004). Health literacy: A prescription to end confusion. Washington, D.C.: National Academies Press.
    Puchalski, C.M., & Ferrell, B. (2010). Making health care whole: Integrating spirituality into patient care. West Conshohocken, PA: Templeton Press.
    Ragan, S.L., Wittenberg, E.M., & Hall, H.T. (2003). The communication of palliative care for the elderly cancer patient. Health Communication, 15, 219-226. doi: 10.1207/S15327027HC1502_9
    Ragan, S.L., Wittenberg-Lyles, E.M., Goldsmith, J., & Sanchez-Reilly, S. (2008). Communication as comfort: Multiple voices in palliative care. New York, NY: Routledge.
    Retornaz, F., Seux, V., Sourial, N., Braud, A.C., Monette, J., Bergman, H., & Soubeyrand, J. (2007). Comparison of the health and functional status between older inpatients with and without cancer admitted to a geriatric/internal medicine unit. Journals of Gerontology. Series A, Biological Sciences And Medical Sciences, 62, 917-922.
    Schlairet, M.C. (2009). End-of-life nursing care: Statewide survey of nurses' education needs and effects of education. Journal of Professional Nursing, 25, 170-177.
    Shipley, S.D. (2010). Listening: A concept analysis. Nursing Forum, 45, 125-134. doi: 10.1111/j.1744-6198.2010.00174.x
    Smith, T.J., & Hillner, B.E. (2010). Explaining marginal benefits to patients, when ‘marginal’ mean additional but not necessarily small. Clinical Cancer Research, 16, 5981-5986.
    Tamayo, G.J., Broxson, A., Munsell, M., & Cohen, M.Z. (2010). Caring for the caregiver [Online exclusive]. Oncology Nursing Forum, 37, E50-E57. doi: 10.1188/10.ONF.E50-E57
    Thompson-Hill, J., Hookey, C., Salt, E., & O'Neill, T. (2009). The supportive care plan: A tool to improve communication in end-of-life care. International Journal of Palliative Nursing, 15, 250-255.
    Villagran, M., Goldsmith, J., Wittenberg-Lyles, E., & Baldwin, P. (2010). Communicating COMFORT: A communication-based model for breaking bad news in health care interactions. Communication Education, 59, 220-234.
    Volandes, A.E., Paasche-Orlow, M., Gillick, M.R., Cook, E.F., Shaykevich, S., Abbo, E.D., & Lehmann, L. (2008). Health literacy not race predicts end-of-life care preferences. Journal of Palliative Medicine, 11, 754-762. doi: 10.1089/jpm.2007.0224
    Weeks, J.C., Cook, E.F., O'Day, S.J., Peterson, L.M., Wenger, N., Reding, D., … Phillips, R.S. (1998). Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA, 279, 1709-1714. doi: 10.1001/jama.279.21.1709
    Weissman, D.E. (2001). Managing conflicts at the end of life. Journal of Palliative Medicine, 4, 1-3. doi: 10.1089/109662101300051843
    Whitney, S.N., McCullough, L.B., Frugé, E., McGuire, A.L., & Volk, R.J. (2008). Beyond breaking bad news: The roles of hope and hopefulness. Cancer, 113, 442-445. doi: 10.1002/cncr.23588
    Wittenberg-Lyles, E., Goldsmith, J., Ragan, S.L., & Sanchez-Reilly, S. (2010). Dying with comfort: Family illness narratives and early palliative care. Cresskill, NJ: Hampton Press.
    World Health Organization. (2011). WHO definition of palliative care. Retrieved from
    Zaider, T., & Kissane, D. (2009). The assessment and management of family distress during palliative care. Current Opinion in Supportive and Palliative Care, 3, 67-71.
    Zhang, B., Wright, A.A., Huskamp, H.A., Nilsson, M.E., Maciejewski, M.L., Earle, C.C., … Prigerson, H.G. (2009). Health care costs in the last week of life: Associations with end of life conversations. Archives of Internal Medicine, 169, 480-488.