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Nursing responds to the demand for improved end-of-life-care
Despite advances in early detection and active treatment of disease and the focus on survivorship, the unfortunate reality is that many individuals will, in fact, die of chronic disease. In the United States alone, the total number of deaths is more than two million per year. (1) Several recent events have highlighted the importance of increased attention to end-of-life care. The Institute of Medicine (IOM) issued a report in 1997 on care of the dying. (1) This report calls for widespread reform in the health care system and leadership by the medical and nursing professions to reform end-of-life care. The social demand for improved end-of-life care has been voiced, in part, by national debate about legislation on assisted suicide and euthanasia. (2) Many aggress that this has been the wake-up call, signifying dissatisfaction with the care one is likely to receive at the end of life.

Nurses are an important component of the health care team who spend much time with patients at the end of life. Nurses continue to advocate for better care of the dying and to play a pivotal role in the reform of health care systems, the integration of palliative care beyond hospice, and addressing the many clinical and policy issues relevant to end-of-life care. (3-5) Improved palliative care is critical across all clinical settings and across multiple disease groups and patient populations.

One current study at the City of Hope National Medical Center, supported by the Robert Wood Johnson Foundation is titled: "Strengthening Nursing Education to Improve End of Life Care." This project includes three goals: reviewing nursing textbooks for end-of-life content; improving end-of-life content in the nursing licensing exam, the NCLEX; and supporting the efforts of key nursing organizations to improve end-of-life education for nurses. The first goal, review of nursing texts, entailed the review of 50 textbooks, encompassing 45,683 pages, which are commonly used in undergraduate nursing programs. Nine areas of end-of-life care were reviewed for content in each of the 50 books. These nine areas included: palliative care defined; quality of life at the end of life; pain; other symptom assessment and management; communication with dying patients and families; roles and needs of family caregivers in end-of-life care; death; issues of policy, ethics, and law; and bereavement. Findings revealed only 2 percent of the overall content and 1.4 percent of chapters in nursing texts were related to end-of-life care. Based on the analysis, many deficiencies were identified in the texts, including inaccurate and insufficient quantity of information regarding critical end-of-life topics. (6-8) A review of medical textbooks, done concurrently at University of California, San Francisco, by Doctors Stephen McPhee and Michael Rabow, has demonstrated very similar findings. (9).

Currently, City of Hope researchers are collaborating with the National Council of State Boards of Nursing, Inc., with the goal of improving end-of-life content in the NCLEX examination. At present, job-analysis study activity statements are being reviewed for end-of-life care applications in conjunction with preparing test questions for end-of-life content. The investigators believe that increased end-of-life content in the NCLEX would be a significant force to expand such content in nursing curriculum.

Another nursing project, the Nursing Leadership Consortium on End of Life Care, funded by the Open Society Institute, Project on Death in American (PDIA), recently convened a meeting to design an agenda for the nursing profession on end-of-life care. (10) This group, organized by the American Association of Critical-Care Nurses, was developed to advance the nursing profession's commitment and efforts to improve care at the end of life. (10) Nursing specialty groups participated in this meeting to mobilize the nursing organizations in a shared agenda for better care of the dying. A copy of the proceedings of this meeting is available through the American Association of Critical-Care Nurses [phone: 949.362.2000; web site:; email:]. A related project, also funded by the Robert Wood Johnson Foundation, is reviewing the certification examinations administered by nursing specialty organizations to encourage more end-of-life content. The project is coordinated by the Oncology Nursing Certification Corporation.

Another pivotal nursing effort in recognition of the universal need for humane end-of-life care was initiated by the American Associations of Colleges of Nursing. Supported by the Robert Wood Johnson Foundation, this group convened a roundtable of nursing experts to stimulate scholarly discussion and to initiate change on this important issue. (11) A result of this roundtable meeting was the development of the End of Life Competency Statements. These statements will affect what is taught in nursing schools to increase the focus on symptom management and psychosocial support. Changing end-of-life care in school curricula includes helping nursing students to alter their goals, so that they do not graduate believing that the essence of nursing is only recovery or wellness. Students need to understand that excellent care at the end of life is also an integral part of nursing. The American Association of Colleges of Nursing has disseminated the results from this meeting and plans to improve end-of-life education [phone: 202.463.6930; web site:].

A newly funded Robert Wood Johnson Foundation project, "End of Life Nursing Education Consortium," will be combining the efforts of the American Association of Colleges of Nursing and the City of Hope researchers to provide a comprehensive, national effort to improve end-of-life care education for nurses. The goal of this project will be to develop a core of expert educators and provide teaching resources to enhance end-of-life competency in undergraduate (BSN and ADN), graduate, continuing education, and through the state boards of nursing. This study will be an organized effort to connect nursing activities, so that there is unity in nursing education and maximal efforts in end-of-life care can be attained. This project will mirror the very successful physician education program, Education for Physicians on End of Life Care (EPEC), sponsored by the American Medical Association.

The next century will bring new opportunities and challenges in care at the end of life. Current social demands, including an aging population, a burdened health care system, and the prevalence of diseases such as cancer, AIDS, and other chronic illnesses, have necessitated increased attention to care at the end of life. Nursing, as a profession dedicated to care of people at all phases of life and across all clinical settings, will be a critical element in the reform of health care systems.

Betty Ferrell, PhD, FAAN, Research Scientist, City of Hope National Medical Center, Duarte, California.

Rose Virani, RN, C, BSN, MHA, OCN, Research Specialist, City of Hope National Medical Center, Duarte, California

1. Field MJ, Cassel CK (eds.): Approaching Death: Improving Care at the End-of-Life. (Report of the Institute of Medicine Task Force). Washington, DC: National Academy Press, 1997.
2. Burt JD: The Supreme Court speaks: Not assisted suicide but a constitutional right to palliative care. New England Journal of Medicine. 1997; 377:1234-1236.
3. Matzo ML, Emanuel EJ: Oncology nurses' practices of assisted suicide and patient-requested euthanasia. Oncology Nursing Forum. 1997; 24 (10):1725-1732.
4. Scanlon C: Unraveling ethical issues in palliative care. Seminars in Oncology Nursing. 1998; 14 (2): 1-9.
5. Oncology Nursing Society: Position Statement on Active Euthanasia and Assisted-Suicide. Pittsburgh: Oncology Nursing Society, 1995.
6. Ferrell BR, Virani R, Grant M: Analysis of end-of-life content in nursing textbooks. Oncology Nursing Forum. 1999; 26 (5): 869-876.
7. Ferrell BR, Virani R, Grant M: Analysis of symptom assessment and management content in nursing textbooks. Journal of Palliative Medicine. 1999; 2 (2): 161-172.
8. Ferrell BR, Virani R, Grant M: Review of communication and family caregiver content in nursing texts. Journal of Hospice and Palliative Nursing. 1999; 1 (3): 97-107.
9. Rabow MW, McPhee SJ, Fair JM, Hardie GE: A failing grade for end-of-life content in textbooks: What is to be done? Journal of Palliative Medicine. 1999; 2 (2): 153-155.
10. American Association of Critical-Care Nurses: Designing an Agenda for the Nursing Profession on End-of-Life Care. (Report of the Nursing Leadership Consortium on End-of-Life Care.) Washington, DC: American Association of Critical-Care Nurses, 1999.
11. American Association of Colleges of Nursing: A Peaceful Death. (Report from the Robert Wood Johnson Foundation End-of-Life Care Roundtable.) Washington, DC: American Association of Colleges of Nursing. November 1997.

Copyright 2000 by Prime National Publishing Corporation. Permission given to reprint on HealthBond. American Journal of Hospice and Palliative Care, Volume 17, Number 3, May/June 2000

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