Nurses spend more time with patients who are facing the end of life (EOL) than any other member of the health care team. In hospice, nurses have been recognized as the cornerstone of palliative care, and it is increasingly apparent that nurses play an equally important role in palliative care across all settings. Studies have documented that nurses and other members of the health care team are inadequately prepared to care for patients with pain at the EOL. Inadequate care of the dying continues to be a problem in the twenty-first century. Many reasons have been cited for this failure, including inadequacies in the basic and continuing education of health care providers.
Challenges to EOL Care
Numerous studies during the 1980s and 1990s have documented that nurses lack knowledge about pain control, one key aspect of EOL care. Pain management has been described as a situation in which physicians continue to underprescribe, nurses inadequately assess and undermedicate patients, and patients take only a portion of the analgesics prescribed or underreport their pain. Generally, physicians and nurses have an inaccurate knowledge base about common pharmacologic agents used in pain control and have exaggerated fears about the likelihood of addiction. The fear of addiction continues to be a major obstacle to adequate treatment of pain at the EOL.
However, pain management is only one aspect of EOL care. Other EOL needs include management of other physical and psychological symptoms, communication with patients and families, preparation of the staff and family care at the time of death, and many other aspects of care of the dying. Attention to EOL issues, such as a report by the Institute of Medicine on EOL care and action by the U.S. Supreme Court on the right to die, have prompted a focus beyond pain management to include other dimensions of EOL care.
Improving EOL Care
Two milestones, a key EOL care project supported by the Robert Wood Johnson Foundation conducted between 1997 and 2000 and its resultant recommendations and the 1997 Institute of Medicine report on EOL care, have addressed these deficiencies, resulting in increased awareness of EOL issues and spurring changes to EOL care and nursing education.
The Robert Wood Johnson Foundation Project. The Robert Wood Johnson Foundation funded study was conducted by the City of Hope investigators. The overall purpose of this project was to strengthen nursing education to improve EOL care by accomplishing three goals: (1) to improve the content regarding EOL care included in major textbooks used in nursing education; (2) to insure the adequacy of content in EOL care as tested by the national nursing examination, the NCLEX; and (3) to support the key nursing organizations in their efforts to promote improved nursing education and practice in EOL care.
The primary activity for the first goal, improving the content regarding EOL care in nursing textbooks, was a review of fifty major textbooks used in nursing education. These fifty texts were selected from a list of over 700 textbooks used in schools of nursing, and then were stratified by topic areas. The areas selected and number of books included were AIDS/HIV (1), assessment/ diagnosis (3), communication (2), community/ home health (4), critical care (4), emergency (2), ethics/legal issues (5), fundamentals (3), gerontology (3), medical-surgical (5), oncology (2), patient education (2), pediatrics (3), pharmacology (4), psychiatric (3), and nursing review (4).
A detailed framework for analyzing the content of the textbooks was developed by the City of Hope investigators. This framework was based on a review of current literature and expert opinion about optimum EOL care. Nine critical content areas were selected: palliative care defined; quality of life (physical, psychological, social, and spiritual well being); pain; other symptom assessment/ management; communication with dying patients and their family members; role/needs of caregivers in EOL care; death; issues of policy, ethics, and law; and bereavement.
The fifty texts encompassed a total of 45,683 pages. Each text was reviewed using the framework. The reviewer scanned the complete index, table of contents, and all text pages for possible content. The reviewers were very inclusive and liberal in their approach, and when any EOL content was identified, those pages were copied. The copied pages then were analyzed for content using a "cutand-paste" approach in which the content was placed on the analysis grid within the appropriate framework section. Key findings of the study were:
- • Of the 45,683 pages of text reviewed, 902 pages were related to EOL content, representing only 2 percent of the total content.
- • Of 1,750 chapters included in the texts, 24 were related to EOL, representing 1.4 percent of all chapters.
- • The nine EOL topic areas reviewed were included infrequently in the texts' tables of contents or indexes. At least one chapter was devoted to an EOL-related topic in 30 percent of the texts.
- • The EOL topics with the poorest focus in the texts were quality-of-life issues at EOL and role/needs of family caregivers. The areas of strongest content were pain and policy/ ethics issues.
- • Overall, 74 percent of the content in the framework was found to be absent from the texts, 15 percent was present, and 11 percent was present and commendable.
Recommendations from this analysis were presented to a conference of publishers and the City of Hope investigators continue follow up with the editors of these texts and other books in order to improve EOL content in future editions. Major progress has been made to date and the textbook editors and authors have been very responsive.
The second goal of the project, ensuring the adequacy of content in EOL Care, as tested by the NCLEX exam, was also successfully implemented. City of Hope investigators worked with the staff of the National Council of State Boards of Nursing to increase the emphasis of EOL care within the exam to increase its priority for nursing education, and thus the knowledge of practicing nurses. Goal three, supporting key organizations in their efforts to promote nursing education and practice in EOL care, was also achieved. Many nursing organizations have been mobilized to address the deficiencies in EOL care.
In addition to studying nursing education, City of Hope nurse researchers also surveyed over 2,300 practicing nurses to determine their perspectives on EOL care. Respondents were asked to rate these dilemmas based on their occurrence as "not common," "somewhat common," or "very common." The most frequently occurring dilemmas were use of advance directives and preserving patient choice/self-determination, which 37 percent and 23 percent, respectively, cited as very common. Interestingly, 93 percent of respondents cited requests for assisted suicide and requests for euthanasia as not common dilemmas, and 6 percent cited these requests as somewhat common. More than one-third of all nurses reported seven of the nine dilemmas, excluding those of assisted suicide and euthanasia, as somewhat common or very common. Acknowledging the diversity in responses to these dilemmas is important. For example, although 37 percent of respondents reported use of advance directives as very common dilemmas, 31 percent of the respondents reported this area as not common.
Respondents were also asked to rate how much of a barrier each factor was to providing good EOL care in their settings. The items were rated as "not a barrier," "somewhat of a barrier," or "a severe barrier." Respondents most frequently cited "influence of managed care on end-of-life care" (25%) as a severe barrier followed closely by "lack of continuity of care across settings" (23%). The barriers that were reported as common and the diversity of these barriers illustrate the complexity of effective EOL care. The respondents identified not only system barriers (e.g., continuity of care, influence of managed care) but also cited patients' (70%) and family members' (73%) avoidance of death as somewhat of a barrier. Other prominent barriers were health care providers' lack of knowledge and personal discomfort with death.
Institute of Medicine report. The Institute of Medicine report on improving EOL care concluded with seven recommendations, two of which spoke directly to the need for improved professional knowledge:
- • Physicians, nurses, social workers, and other health care professionals must commit themselves to improving care for dying patients and using existing knowledge effectively to prevent and relieve pain and other symptoms.
- • Educators and other health care professionals should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to provide good care for dying patients.
End-of-Life Nursing Consortium
The studies of the 1990s lead to the End-of-Life Nursing Education Consortium (ELNEC) project—a comprehensive, national education program to improve EOL care by nurses. Primary project goals include developing a core of expert nursing educators and coordinating national nursing education efforts in EOL care. This project points to the future of nursing education in the twenty-first century.
This three-and-a-half-year ELNEC project began in February 2000, and is a partnership of the American Association of Colleges of Nursing (AACN) and the City of Hope Cancer Center (COH). A primary goal of the project is to bring together leading nursing groups and perspectives to form a collaborative approach to improve EOL education and care. The ELNEC curriculum has been developed through the work of highly qualified subject matter experts serving as consultants, with extensive input from the advisory board and reviewers. Courses are designed to prepare educators to be instructional resources for their schools and organizations, and serve as a vital force in the dissemination of this important content.
ELNEC includes a total of eight courses, five of which are offered for baccalaureate and associate degree faculty who can then facilitate integration of EOL nursing care in basic nursing curricula. Two courses are planned for school-based, specialty organization, and independent nursing continuing education providers in order to influence practice of nurses in their target groups. The final course will be for state board of nursing representatives to strengthen their commitment to encourage end-of-life education and practice initiatives in their states. In addition, five regional ELNEC courses will be offered.
American Association of Colleges of Nursing. A Peaceful Death. Report from the Robert Wood Johnson End-of-Life Care Roundtable. Washington, DC: Author, 1997.
American Nurses Association. Position Statement on Active Euthanasia and Assisted Suicide. Washington, DC: Author, 1994.
Ferrell, Betty R. "End-of-Life Care: How Well do We Serve Our Patients?" Nursing 28, no. 9 (1998):58–60.
Ferrell, Betty R., Marcia Grant, and Rose Virani. "Strengthening Nursing Education to Improve End-of-Life Care." Nursing Outlook 47, no. 6 (1999):252–256.
Ferrell, Betty, Rose Virani, and Marcia Grant. "Analysis of End-of-Life Content in Nursing Textbooks." Oncology Nursing Forum 26, no. 5 (1999):869–876.
Ferrell, Betty, Rose Virani, Marcia Grant, Patrick Coyne, and Gwen Uman. "Beyond the Supreme Court Decision: Nursing Perspectives on End-of-Life Care." Oncology Nursing Forum 27, no. 3 (2000): 445–455.
Field, Marilyn J., and Chris K. Cassel, eds. Approaching Death: Improving Care at the End of Life. Report of the Institute of Medicine Task Force. Washington, DC: National Academy Press, 1997.
American Association of Colleges of Nursing. "ELNEC Project." In the American Association of Colleges of Nursing [web site]. Available from www.aacn.nche.edu/ELNEC .
BETTY R. FERRELL