In 1997 the Institute of Medicine brought attention to what was then a largely neglected branch of health care with its report Approaching Death: Improving Care at the End of Life. Among the ensuing initiatives was the End-of-Life Nursing Education Consortium (ELNEC), a national education strategy to improve end-of-life care. To date, ELNEC has trained more than 4,000 nurses from all 50 states in educational and clinical settings.
"In the late 1990s the American Association of Colleges of Nursing [AACN] began to explore competencies that were needed to be able to give good end-of-life care," says Pam Malloy, MN, RN, OCN, the ELNEC project director at the AACN. "We received a grant from the Robert Wood Johnson Foundation to bring together a roundtable of experts."
The AACN convened a 1997 meeting to outline nursing competencies that they deemed necessary for providing high-quality care to patients and their families, which was the first step in the development of ELNEC. The meeting produced a consensus document titled A Peaceful Death: Recommended Competencies and Curriculum Guidelines for End-of-Life Care.
At about the same time, says Malloy, researchers at the City of Hope National Medical Center (CHNMC) in Duarte, California, also began focusing on improving end-of-life care and palliative care education in nursing school curricula and textbooks. From 1997 to 2000 Betty Ferrell, PhD, RN, FAAN, and other researchers at the CHNMC examined 50 widely used nursing textbooks, covering both general and specialty nursing, for a project titled "Strengthening Nursing Education to Improve End-of-Life Care." Their findings have been published in many nursing journals.
"They looked at what nursing students were being taught and found that only 2% of textbook content included any information dealing with end-of-life care," Malloy explains. "This was very surprising. Ferrell began to work with publishers and encouraged them to include more information about end-of-life care. Many complied."
Ferrell and colleagues found that only 24 chapters from a total of 1,750 (1.4%), and 902 pages from a total of 45,683 (2%), were devoted to any topic dealing with the end of life. Textbooks that did cover end-of-life issues mostly discussed pain, policy, or ethics. Quality-of-life issues and the role and needs of family caregivers had the poorest coverage. Researchers also found that most end-of-life content focused on cancer and AIDS. Despite otherwise ample coverage of pain, overall there was very little information about pain experienced at the end of life.
Launching the program. With funding from the Robert Wood Johnson Foundation, in February 2000 the AACN and CHNMC developed and launched a national education program about end-of-life care for RNs. The training was intended for nursing faculty; continuing education providers; staff development educators; and specialty nurses in pediatrics, oncology, critical care, and geriatrics, among others.
"Our goal was to train the trainers," says Malloy, "so that they then teach nursing students, their coworkers, and other practicing nurses."
Additional funding for the project has come from the Aetna Foundation, the Archstone Foundation, and the California HealthCare Foundation. In August 2002 the National Cancer Institute provided a $1.4 million grant to expand the reach of the initiative.
"The ELNEC program inspired us to initiate changes in our health care system and in the education of students from all health care disciplines," says Linda K. Strodtman, PhD, RN, an assistant professor of nursing and clinical nurse specialist at the University of Michigan. "We first used it to educate 100 nurses from both the University of Michigan Health Care System and the School of Nursing."
Strodtman notes that ELNEC led to the development of an educational video that is now used not only at her institution but also throughout the United States. "Evan Mayday's Good Death [shows] how an interdisciplinary team came together to support a man and his wife in his end-of-life decision making," she says. "This film is routinely used by ELNEC in its national programs. We are now working on two more films-one related to decision making in pediatric care and another that will be a collection of video clips that health educators can use in tailoring their educational sessions for specific needs [and] audiences.
"Moreover, the ELNEC organization has served as a catalyst to initiate needed palliative care and end-of-life care education and as a powerful networking resource for educators."
Malloy is confident that the number of nurses who have received ELNEC training will soon exceed 5,000. "They are equipped with materials to go back to their institutions and train others. Nursing faculty are also training students, and it is becoming part of the curriculum in many nursing programs," she says.
Lores Vlaminich, RN, a nurse consultant and former hospice and home care administrator in Minnesota, became an ELNEC trainer and uses the material when she speaks on end-of-life care. "We did not receive a good education on this subject the first time around," she says.
Vlaminich points out that she generally speaks at public conferences focused on end-of-life care, as well as to an interdisciplinary group that includes not only nurses but also social workers, psychologists, probation officers, and professionals who work in the chemical-dependency setting. The physicians who sometimes attend are generally the medical directors of a hospice.
The initial grant from the Robert Wood Johnson Foundation funded eight ELNEC core courses, first offered in January 2001, but the course offerings have since expanded to 12. The ELNEC-Oncology and ELNEC-Pediatric Palliative Care programs were first offered in 2003; next came a critical care-specific course for nurses working on intensive care, coronary care, burn, or dialysis units and in EDs.
A pilot geriatric ELNEC program was held in February 2007 with funding from the California HealthCare Foundation. Vlaminich would like to see ELNEC expand to home care. "I feel that there are unique situations in the home care setting, and the field is growing," she says.
While the program focuses on improving end-of-life care in the United States, ELNEC trainers and faculty have spoken at international conferences and have traveled to 42 nations on six continents to teach courses and work with local educators, health administrators, and community leaders.
"[To go international] was not our intention, but it came about," says Malloy. "Hospitals are asking us to teach the courses. We're seeking funding to translate the program into several languages."
At the 2006 Salzburg Medical Seminar Series for Nurses in Palliative Care in Austria, sponsored by the Open Society Institute, ELNEC faculty members taught the curriculum to 38 nursing leaders in education and clinical practice from 14 Eastern European countries-"an important step," says Malloy.
Roxanne Nelson, BSN, RN