Patient Control and End-of-Life Care Part I: The Advanced Practice Nurse Perspective

Deborah L. Volker

David L. Kahn

Joy H. Penticuff

ONF 2004, 31(5), 945-953. DOI: 10.1188/04.ONF.945-953

Purpose/Objectives: To explore understanding of preferences of adult patients with cancer for control in the context of end-of-life care and to explore strategies that oncology advanced practice nurses (APNs) use to assist patients in achieving personal control at the end of life.

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    American Nurses Credentialing Center. (2003). Advanced practice palliative care nurse examination. Retrieved January 7, 2004, from

    Beaver, K., Luker, K.A., Owens, R.G., Leinster, S.J., Degner, L.F., & Sloan, J.A. (1996). Treatment decision making in women newly diagnosed with breast cancer. Cancer Nursing, 19, 8-19.

    Brandt, B. (1991)). Informational needs and selected variables in patients receiving brachytherapy. Oncology Nursing Forum, 18, 1221-1227.

    Chochinov, H.M., Hack, T., Hassard, T., Kristjanson, L.J., McClement, S., & Harlos, M. (2002). Dignity in the terminally ill: A cross-sectional, cohort study. Lancet, 360, 2026-2030.

    Davison, B.J., Degner, L.F., & Morgan, T.R. (1995). Information and decision-making preferences of men with prostate cancer. Oncology Nursing Forum, 22, 1401-1408.

    Degner, L.F., Kristjanson, L.J., Bowman, D., Sloan, J.A., Carriere, K.C., O'Neil, J., et al. (1997). Information needs and decisional preferences in women with breast cancer. JAMA, 277, 1485-1492.

    Degner, L.F., & Russell, C.A. (1988). Preferences for treatment control among adults with cancer. Research in Nursing and Health, 11, 367-374.

    Degner, L.F., & Sloan, J.A. (1992). Decision making during serious illness: What role do patients really want to play? Journal of Clinical Epidemiology, 45, 941-950.

    Denzin, N. (1989). Interpretive interactionism. Newbury Park, CA: Sage.

    Emanuel, E.J., & Emanuel, L.L. (1998). The promise of a good death. Lancet, 351(Suppl. 2), SII21-SII29.

    Emnett, J., Byock, I., & Twohig, J. (2002). Advanced practice nursing: Pioneering practices in palliative care. Missoula, MT: Promoting Excellence in End-of-Life Care.

    Field, M.J., & Cassel, C.K. (Eds.). (1997). Approaching death: Improving care at the end of life. Washington, DC: National Academy Press.

    Foley, K.M., & Gelband, H. (Eds.). (2001). Improving palliative care for cancer. Washington, DC: National Academy Press.

    Friedman, B. T., Harwood, M.K., & Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of Palliative Medicine, 5, 73-84.

    Goldstein, N.E., & Lynn, J. (2002). The 107th Congress' legislative proposals concerning end-of-life care. Journal of Palliative Medicine, 5, 819-827.

    Hack, T.F., Degner, L.F., & Dyck, D.G. (1994). Relationship between preferences for decisional control and illness information among women with breast cancer: A quantitative and qualitative analysis. Social Science and Medicine, 39, 279-289.

    Hopkinson, J., & Hallett, C. (2002). Good death? An exploration of newly qualified nurses' understanding of good death. International Journal of Palliative Nursing, 8, 532-539.

    Jennings, B., Ryndes, T., D'Onofrio, C., & Baily, M. (2003). Access to hospice care. Expanding boundaries, overcoming barriers. Hastings Center Report, 33(Suppl.), S3-S7, S9-S13, S15-S21.

    Johnson, M., Maas, M., & Moorhead, S. (2000). Nursing outcomes classification (NOC) (2nd ed.). St. Louis, MO: Mosby.

    Kuebler, K. (2003). Article about palliative care omitted important information [Letter to the editor]. Oncology Nursing Forum, 30, 551.

    Kuebler, K., & Moore, C. (Eds.). (2002). The Michigan palliative advanced practice nurse training manual. Retrieved January 7, 2004, from

    Kuebler, K.K., Berry, P.H., & Heidrich, D.E. (Eds.). (2002). End-of-life care: Clinical practice guidelines for nurses. Philadelphia: W.B. Saunders.

    Lehna, C. (2002). A needs assessment for an end-of-life care curriculum for advanced practice nursing students. Internet Journal of Advanced Nursing Practice, 5(2). Retrieved January 7, 2004, from

    Leman, R. (2004, March 10). Sixth annual report on Oregon's Death With Dignity Act. Retrieved July 23, 2004, from

    Lewis, F.M. (1982). Experienced personal control and quality of life in late-stage cancer patients. Nursing Research, 31, 113-119.

    Lewis, F.M. (1987). The concept of control: A typology and health-related variables. Advances in Health Education and Promotion, 2, 277-309.

    Lewis, F.M. (1989). Attributions of control, experienced meaning, and psychosocial well-being in patients with advanced cancer. Journal of Psychosocial Oncology, 7, 105-119.

    Lewis, F.M., Haberman, M.R., & Wallhagen, M.I. (1986). How adults with late-stage cancer experience personal control. Journal of Psychosocial Oncology, 4, 27-41.

    Lynn, J., & Adamson, D.M. (2003). Living well at the end of life: Adapting health care to serious chronic illness in old age. Retrieved January 7, 2004, from

    McCorkle, R., Robinson, L., Nuamah, I., Lev, E., & Benoliel, J.Q. (1998). The effects of home nursing care for patients during terminal illness on the bereaved's psychological distress. Nursing Research, 47, 2-10.

    McCorkle, R., Strumpf, N.E., Nuamah, I.F., Adler, D.C., Cooley, M.E., Jepson, C., et al. (2000). A specialized home care intervention improves survival among older post-surgical cancer patients. Journal of the American Geriatrics Society, 48, 1707-1713.

    Oncology Nursing Certification Corporation. (2004). 2004 ONCC certification bulletin. Retrieved July 23, 2004, from

    Oncology Nursing Society. (2003a). The role of the advanced practice nurse in oncology care. Oncology Nursing Forum, 30, 549-550.

    Oncology Nursing Society. (2003b). Statement on the scope and standards of advanced practice in oncology nursing (3rd ed.). Pittsburgh, PA: Author.

    Quill, T.E. (2000). Perspectives on care at the close of life. Initiating end-of-life discussions with seriously ill patients: Addressing the "elephant in the room." JAMA, 284, 2502-2507.

    Rankin, M.A., Donahue, M.P., Davis, K., Katseres, J.K., Wedig, J.A., Johnson, M., et al. (1998). Dignified dying as a nursing outcome. Outcomes Management for Nursing Practice, 2, 105-110.

    Ritz, L.J., Nissen, M.J., Swenson, K.K., Farrell, J.B., Sperduto, P.W., Sladek, M.L., et al. (2000). Effects of advanced nursing care on quality of life and cost outcomes of women diagnosed with breast cancer. Oncology Nursing Forum, 27, 923-932.

    Steinhauser, K.E., Clipp, E.C., McNeilly, M., Christakis, N.A., McIntyre, L.M., & Tulsky, J.A. (2000). In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine, 132, 825-832.

    Street, A.F., & Kissane, D.W. (2001). Constructions of dignity in end-of-life care. Journal of Palliative Care, 17(2), 93-101.

    Volker, D.L. (2001). Oncology nurses' experiences with requests for assisted dying from terminally ill patients with cancer. Oncology Nursing Forum, 28, 39-49.

    Weintraub, F.N., & Hagopian, G.A. (1990). The effect of nursing consultation on anxiety, side effects, and self-care of patients receiving radiation therapy. Oncology Nursing Forum, 17(Suppl. 3), 31-36.

    White, N.J., Given, B.A., & Devoss, D.N. (1996). The advanced practice nurse: Meeting the information needs of the rural cancer patient. Journal of Cancer Education, 11, 203-209.