July 2009

Grant Results

SUMMARY

The End-of-Life Nursing Education Consortium is a national effort to improve end-of-life care by nurses.

From February 2000 through September 2004, the American Association of Colleges of Nursing, Washington, in collaboration with City of Hope National Medical Center, Duarte, Calif., conducted 15 training conferences designed to enable nursing school faculty to integrate instruction on end-of-life care into their schools' curricula.

Key Results

  • The faculty training sessions provided content, teaching tools and resources in the core areas in which nurses must be competent in order to deliver quality end-of-life care — pain management; symptom management; ethical/legal issues; cultural considerations; communication; grief; quality of life at the end of life and preparation and care for the time of death.
  • Some 1,400 nurse educators representing about one-third of the nursing programs in the United States participated in the training sessions.
  • A 2002 evaluation conducted after the first five training conferences found that nursing faculty had added an average of 10 hours of end-of-life content to their schools' curriculum and, within a year of the training, had taught an estimated 19,000 nursing students in end-of-life care per module for each of the nine modules.
  • Nursing students' examination scores following the training demonstrated their increased mastery of eight of the nine core end-of-life content areas.
  • About half of the nurse educators also were using the end-of-life material to teach students or practicing staff nurses in settings off campus, including hospitals, clinics, long-term care facilities, hospices or palliative care centers and nursing homes.

For more results see Results and Evaluation Findings.

Funding
The Robert Wood Johnson Foundation (RWJF) provided six grants totaling $3,707,064 for this project.

 See Grant Detail & Contact Information
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THE PROBLEM

In the 1990s, a number of studies documented that nurses and other members of the health care team were inadequately prepared to care for patients at the end of life.

A pivotal 1997 Institute of Medicine (IOM) report, Approaching Death: Improving Care at the End of Life, pointed to inadequate professional and continuing education as the chief cause of deficiencies in nurses' knowledge and attitudes with respect to pain and symptom management, ethical considerations, communication skills and the legal aspects of end-of-life care. To address these problems, the IOM report recommended changing undergraduate, graduate and continuing education to ensure that practitioners develop competence in caring for dying patients.

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RWJF STRATEGY

In response to the IOM report, researchers at the City of Hope National Medical Center, a California-based biomedical research and treatment center, conducted a study (RWJF grant ID# 032829; see Grant Results) that examined how well educators were preparing nursing students to care for the dying. When they examined nursing textbooks, the researchers found that only 2 percent of the content of 50 leading textbooks addressed end-of-life care.

As part of the same study, City of Hope researchers surveyed 725 nursing school deans and faculty and found that many felt unprepared to teach end-of-life content. At the same time, the Washington-based American Association of Colleges of Nursing was attempting to define a set of "core competencies" for nurses in end-of-life care.

With support from RWJF (ID# 031451), a workgroup of nurse educators, clinicians and researchers, including staff from the City of Hope, produced the 1997 document, A Peaceful Death: Recommended Competencies and Curriculum Guidelines for End-of-Life Care.

The project described here sought to implement the recommendations outlined in A Peaceful Death by helping nurse educators integrate end-of-life content into existing nursing programs.

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THE PROJECT

From February 2000 through September 2004, the American Association of Colleges of Nursing and the City of Hope National Medical Center spearheaded a national effort to create a "consortium," or cadre, of nurse educators trained in end-of-life care that could share this specialized information with others. Called the End-of-Life Nursing Education Consortium, the project's goals were to:

  • Design an evidence-based end-of-life care curriculum for nurses.
  • Use the curriculum to train undergraduate nurse faculty and continuing education providers throughout the United States in end-of-life care.
  • Prepare trainees to integrate what they learned into the education programs of their home institutions.

The project built on the collaboration between the American Association of Colleges of Nursing and the City of Hope that began with the creation of the Peaceful Death framework document. Project staff at the American Association of Colleges of Nursing, a membership organization of more than 500 undergraduate and 300 graduate schools of nursing in the United States, led the effort to recruit nursing faculty for the training conferences. Project staff at the City of Hope provided research and content expertise in designing the end-of-life curriculum and led the effort to create a pediatric version of the end-of-life training (ID# 046803).

The project team recruited a 26-member advisory board to promote input from and participation by nursing organizations, hospitals and educational institutions around the country. Members included representatives from the American Nurses Association, Hospice and Palliative Nurses Association, Oncology Nursing Society, the Veterans Administration Health Systems and faculty from schools and colleges of nursing. (See Appendix 1 for a list of advisory board members.)

Four advisory board members, working under a subcontract with the American Association of Colleges of Nursing, selected end-of-life content, drafted the core curriculum and presented it to the advisory board for their input and suggestions for revision. The advisory board members also served as faculty for the training programs and helped inform the larger professional community about the project and the importance of integrating end-of-life content into nursing schools and continuing education programs.

The End-of-Life Nursing Education Consortium project consisted of the following six grants:

  • Grant ID# 037617 supported the design of the core end-of-life curriculum and the initial training sessions. Project staff invited nurse educators at undergraduate and associate degree schools of nursing and health care institutions throughout the country to apply for places in the free training sessions. In a competitive selection process, applicants completed a pre-course survey on their institutions' existing end-of-life curriculum, outlined a plan of action for increasing end-of-life content in the curriculum and secured letters of commitment to implement the plan from their school dean or administrator.
  • Grant ID# 040766 provided supplemental funding when the first call for applicants drew 400 applications for 100 available places. The funding allowed project staff to increase enrollment in the already scheduled courses, add three more courses (two for undergraduates and one for continuing education providers) and offer an abridged course to nurse faculty participating in Last Acts, an RWJF-funded national communications campaign to improve care and caring near the end of life. The project team subcontracted with the Hospice of the Florida Suncoast to coordinate the Last Acts activities.
  • Grant ID# 046803 supported the City of Hope National Medical Center in the creation of a pediatric version of the core end-of-life curriculum. In June 2002, at a core training session, the project team piloted and solicited feedback on an initial version of a pediatric end-of-life course with a group of 20 nurses from leading pediatric palliative care organizations. These nurses later formed the Pediatric Palliative Care Advisory Board and helped revise and create a final pediatric end-of-life curriculum (see Appendix 2).
  • Grant ID# 043977 supported the design and validation of an examination based on the curriculum for faculty to use in assessing nursing students' knowledge gains in end-of-life care. See Evaluation for details.
  • The final two grants (ID#s 044105 and 048733) supported two training sessions on pediatric palliative care and a variety of transitional activities, including efforts to sustain the project by obtaining grants from other funding sources.

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RESULTS

The project yielded the following results:

  • The project team, with input from curriculum consultants and other advisory board members, created the End-of-Life Nursing Education Consortium core curriculum. The core curriculum provides essential content on the competencies outlined in the American Association of Colleges of Nursing's Peaceful Death document. The 1,000-page curriculum includes PowerPoint slides, "talking points" for each slide, case studies and other teaching strategies to help educators teach and integrate end-of-life content within their home institutions. The curriculum includes nine modules related to end-of-life care:
    • Nursing care at the end of life (overview)
    • Pain management
    • Symptom management
    • Ethical/legal issues
    • Cultural considerations in end-of-life care
    • Communication
    • Grief, loss and bereavement
    • Preparation and care for the time of death
    • Achieving quality of life at the end of life
      (See Appendix 3 for a brief overview of the modules.)
  • City of Hope researchers created a pediatric version of the end-of-life curriculum. The End-of-Life Nursing Education Consortium — Pediatric Palliative Care includes the nine modules of the core curriculum and an additional module, Special Considerations in Pediatric Palliative Care. The added module provides an overview of pediatrics and growth and development issues aimed at nursing students and practicing nurses with limited experience working with children facing life-threatening illness. (See Appendix 3 for a brief overview of the modules.)
  • Between January 2001 and August 2004, the project trained 1,453 nurse educators at 15 conferences around the country. Trainees included:
    • 547 undergraduate educators from 461 baccalaureate and associate degree nursing programs. These programs represented about one-third of the 1,500 undergraduate nursing schools in the United States. All 50 states, the District of Columbia, Virgin Islands and Puerto Rico were represented. Baccalaureate degree programs were the majority (61 percent), followed by associate degree programs (37 percent) and combined baccalaureate and associate degree programs (two percent).
    • 261 continuing education providers and clinical staff development educators. Educators from 49 states, the District of Columbia and British Columbia participated in three courses, which targeted nurses with limited experience in end-of-life care. The majority of participants (81 percent) were responsible for clinical staff development at health care organizations. Thirteen percent were from specialty nursing organizations, 12 percent from universities or schools of nursing, 9 percent from independent businesses and 3 percent from state nursing organizations.
    • 455 nurses attending regional conferences of the Last Acts national program. The project team designed a two-day version of the core curriculum for presentation at five regional Last Act conferences between September 2001 and September 2002. Continuing education and staff development nurse educators from 45 states participated in the trainings. The nurses, who had experience in end-of-life care, represented a variety of facilities, including hospices, hospitals, palliative care programs, home health, long-term care and outpatient clinics.
    • 190 pediatric nurses from 44 states and the District of Columbia. Pediatric nurse faculty, nurse practitioners, clinical nurse specialists, staff development educators and staff nurses attended two three-day trainings, which took place in August 2003 and August 2004.
  • The trained nurse educators are using the curriculum to educate nursing students and practicing nurses throughout the country in end-of-life care. Based on action plans designed during their training sessions, the nurse educators are employing diverse strategies to implement end-of-life content in their home institutions.
    • Within schools of nursing, some educators have created complete palliative tracks while others are integrating one or more modules into an existing course.
    • Continuing education providers train practicing nurses in end-of-life care in a wide array of settings. Some are providing staff development programs for small groups while others are reaching hundreds of nurses in a large multi-hospital system.
    • Trained nurse educators are training their colleagues at conferences and national meetings. For example, 14 trainers from the initial pediatric training sessions held three national trainings in pediatric end-of-life care sponsored by the Association of Pediatric Oncology Nurses and Supportive Care of the Dying: A Coalition for Compassionate Care. A total of 197 nurses from more than 20 states attended these trainings.

Case Study: How Educators Are Applying the End-of-Life Curriculum

ELNEC Connections, a quarterly electronic newsletter, showcases innovative examples of nurse educators integrating end-of-life content into the educational activities of their home institutions. The story of one "navy nurse" illustrates how a creative and committed educator can "take the curriculum and run with it," according to the project director, Pam Malloy.

The nurse, a lieutenant commander in the United States Navy, returned to her home institution, a medical center in San Diego, with ideas for expanding the Navy's comfort suites. These are nurturing places where dying people can go to be away from other patients. Realizing that the comfort suites were not always in use, the lieutenant commander made them available to women and families who have suffered a stillbirth.

For navy nurses, "home" is wherever the U.S. navy sails, and, in 2005, her "home" became a hospital ship sent to the Northern coast of Sumatra to bring relief to tsunami-ravaged Banda Aceh. In e-mail messages sent from her ship, the lieutenant commander told Malloy about being taken aback by the suffering she witnessed — not only from tsunami-related injuries, but also from cases of advanced cancer. Drawing from the end-of-life content modules, she has provided Indonesian nurses with extensive, culturally aware education in cancer pain assessment and management.

According to Malloy, this nurse's experience illustrates the meaning of "consortium" as a network of educators trained in end-of-life care, who can use, adapt and redefine the curriculum for diverse populations and cultures — even one as remote as Indonesia. All consortium members, even the project team, continuously learn from one another. When "we created the nine content modules," says Malloy, "tsunami was not part of our vocabulary — now, thanks to a resourceful navy nurse, it is."

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EVALUATION

Staff from City of Hope and the American Association of Colleges of Nursing conducted an evaluation of the End-of-Life Nursing Education Consortium that examined outcomes for the nurse educators who participated in the initial eight end-of-life training sessions. The evaluation focused on whether nurse educators succeeded in integrating the end-of-life curriculum into the educational programs of their home institutions and whether they were able to train student nurses and practicing nurses in the elements of the curriculum. A second evaluation, supported by grant ID# 043977, examined knowledge gains by student nurses.

  • To evaluate the program's impact on nurse educators, the project team collected baseline data from the applications and pre-course surveys that nurses were required to complete prior to their training. The presurvey asked participants about their perceptions of their school or institution's existing end-of-life training program and their goals for integrating the new curriculum. Twelve months after the training, the project team mailed surveys to all participants asking them to reassess the curriculum and describe the extent to which they had integrated it and used it in their educational activities. The project team collected 12-month data from 502 of the 547 undergraduate faculty members (92 percent) who attended the five initial trainings and 227 of the 261 continuing education providers who attended the three training sessions (87 percent).
  • To evaluate students' knowledge gains in end-of-life care, the project team designed and pilot tested a multiple-choice examination based on the curriculum. To be of maximum use to nursing students, the team designed the test items to be consistent with the national nursing licensing examination. In the fall of 2001, faculty at 27 nursing colleges and universities, who had completed their own training in the curriculum, volunteered to administer a 109-item version of the test to approximately 800 students before teaching at least four of the nine curriculum modules (pain, culture, communication and grief/loss/bereavement). They then used the same 109 items as a post-test for the same group of students. The project team collected usable paired pre-/post-tests on 602 students. The team released a validated 106-item test to approximately 1,190 end-of-life trained educators in October 2002.

In addition, the Hospice of the Florida Suncoast collected evaluation data for 455 nurses who received end-of-life training at the five Last Acts regional conferences. Hospice staff collected pre-course surveys, course evaluation, post-course goals and six and 12-month follow-up reports from participants.

Evaluation Findings

The project team reported their findings in two articles: "Evaluation of the End-of-Life Nursing Education Consortium Undergraduate Faculty Training Program" in the November 1, 2005, issue of the Journal of Palliative Medicine and "Evaluation of End-Of-Life Nursing Education for Continuing Education and Clinical Staff Development Educators" in the January/February 2006 issue of the Journal for Nurses in Staff Development.

  • On average, nursing schools added over 10 hours of end-of-life content to their curricula following faculty's participation in end-of-life training. The total amount of time in the curriculum devoted to any end-of-life topic increased from a mean of 18.59 hours prior to the course to 28.72 hours following the course.
  • Twelve months after completing the course, nurse faculty reported a significant improvement in their school's end-of-life curriculum in all nine content areas. The nurses rated the adequacy of their school's curriculum on a scale of zero (not adequate) to 10 (very adequate) before and after they attended the training. Pre- and post-course ratings showed that participants perceived a significant improvement in all nine areas.
  • Nursing students significantly increased their mastery in eight of the nine content areas of the end-of-life curriculum. Nursing students "mastered" the subject matter if they scored 80 percent or higher on the 109-item examination and were categorized as "non-mastery" if they scored less than 80 percent. Students showed the greatest improvement in knowledge, or "mastery," in nursing care at the end of life, ethical issues and achieving quality end-of-life care. Knowledge gains were also substantial in pain management, cultural aspects, communication and care during death and dying. Grief and loss was the only module in which the pre- and post-course knowledge improvement was not significant.
  • Within 12 months of completing the course, the 502 nurse faculty instructed 19,000 or more students in each of the nine curriculum components. At each of the 460 participating programs, an average of 50 students received training in end-of-life care. In their article in the Journal of Palliative Medicine, the project team predicts that "even greater numbers of students will benefit" after curriculum changes are fully implemented.
  • About half (49 percent) of all trained nurse educators (faculty and continuing education providers) used the end-of-life curriculum to teach outside of their nursing school program or agency.
  • The effects of the training on nurse faculty were diverse. They included attending other continuing education courses in palliative care (46 percent), personally subscribing to end-of-life publications and journals (43 percent), seeking personal clinical experience (including volunteering) to increase end-of-life skills (25 percent) and becoming involved in committees or task forces on palliative care (29 percent).
  • Twelve months after completing their training, nurse educators in academic and clinical programs rated new graduates and practicing nurses as more effective in providing end-of-life care. This finding reflects the nurses' integration of end-of-life content into the curriculum of their home institution in the 12 months after they completed the end-of-life training. Overall, participants reported significant improvement in their own teaching.
  • Twelve months after completing their training, continuing education and staff development educators reported an increase in the number of practicing nurses who attend educational activities on end-of-life care. Attendance more than doubled in three areas: nursing care at the end of life; loss, grief and bereavement; and preparation for and care at the time of death.

Communications

Two advisory board members (Marianne Matzo and Deborah Sherman) coordinated 10 articles about the end-of-life curriculum that appeared in Nurse Educator, Journal of Continuing Education in Nursing, Journal of Professional Nursing and other nursing journals.

From May 2002 through November 2004, the American Journal of Nursing published a bi-monthly palliative care series (available online), co-edited by Betty Ferrell, the City of Hope project director. Nine of the 16 articles in the series cover the end-of-life curriculum modules. The articles illustrate the curriculum topics with real-life stories of patients and families coping with end-of-life issues, provide resources for further information, and allow readers to obtain continuing education credit by completing a written or online test. (RWJF Grant ID# 042023 supported this series.) See the Bibliography for publication details.

ELNEC Connections, the consortium's quarterly electronic newsletter for nurse educators who have gone through the end-of-life training, showcases innovative efforts in end-of-life care education.

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LESSONS LEARNED

  1. To effect real change in nursing education, help educators integrate new material rather than create new courses. The project team encouraged busy nursing faculty to integrate the end-of-life content into courses they already taught: the pain management module, for example, could fit into a course on oncology. This approach reaches more students and avoids overloading already packed nursing curricula. (Project Director Ferrell)
  2. When training "trainers," don't assume you know the knowledge level of your audience. Assuming that a group of oncology nurses had advanced knowledge about end-of-life care, the project team reduced their training from a three-day to a one-day version. When the nurses arrived, the trainers realized that their knowledge of end-of-life content was not as high as expected. The project team has decided not to use the abbreviated version again. (Anne Rhome, M.P.H., R.N., deputy executive director, American Association of Colleges of Nursing)

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AFTER THE GRANT

The July 2009 ELNEC Strategic Plan reported that ELNEC has trained 8,983 nurses in its train-the-trainers program.

  • Undergraduate and graduate education: Approximately 900 baccalaureate and associate degree nursing faculty representing more than 65 percent of baccalaureate nursing programs nationally. Approximately 400 graduate faculty are ELNEC trained representing over 65 percent of graduate programs.
  • Continuing education: Approximately 3,300 nurses who provide education at various levels within the organization and in diverse clinical settings (i.e., Advance Practice Nurses, Continuing Education providers, professional nursing organization educators, institution-wide staff development educators, unit-specific educators, community educators, etc. have been trained to date).
  • Pediatric Palliative Care: Approximately 1178 trainers prepared over eight ELNEC-PPC (Pediatric Palliative Care) courses including six courses done in collaboration with the Association of Pediatric Hematology/Oncology Nurses.
  • ELNEC International: More than 2000 professionals trained in 61 countries by the trainers. For example:
    • Salzburg course in 2007 reaching 40 nurses from 14 countries.
    • Africa, July 2007 for 38 nurses and MD's from throughout Tanzania and other countries in Africa.
    • Vienna, Austria, 2007 for Sigma Theta Tau.
    • Salzburg course in 2008 reaching 40 nurses from 18 countries.
    • Tajikistan course in 2008 reaching 42 nurses and MDs.
    • Japan, 1000 nurses trained to date through multiple courses.
    • India, two courses held February 2009 reaching 57 trainers.
    • Mexico, 300 nurses trained in 2009.
  • ELNEC Critical Care: 675 participants representing 38 states, the District of Columbia and Canada have taken the ELNEC Critical Care course in seven sessions; the curriculum was revised in 2009.
  • ELNEC Geriatrics: 530 nurses have been trained in six course sessions of the ELNEC course in palliative care in geriatric care settings including acute care, long term care and hospice care through the education of nurses.
  • ELNEC Veteran Affairs: This fifth curriculum is being launched in 2009 in conjunction with the national VA palliative care initiative.

Federal and private foundation grants, participant registration fees and the two sponsoring organizations, the American Association of Colleges of Nursing and City of Hope, have supported the ongoing trainings.

In July 2002, the consortium received a four-year, $1.4 million grant from the National Cancer Institute to extend end-of-life training to graduate degree nursing faculty. The project team hosted four training sessions for nurse educators, who represented 63 percent of the nation's graduate nursing schools. These annual courses used an adapted core curriculum and teaching materials. After 2006, the program was funded by the American Association of Colleges of Nursing.

In July 2003, the National Cancer Institute awarded the City of Hope a five-year $1,357,100 grant to lead an educational initiative called "Oncology Nursing Education in End-of-Life Care". This project, which built on the core curriculum, was designed to improve end-of-life care for cancer patients through a national network of oncology nurses. Funding from the National Cancer Institute ended in 2006; however, the project team continued to offer the course in collaboration with the Oncology Nursing Society.

In November 2006, the core curriculum was adapted to create a Critical Care training course, an initiative funded in part by the Archstone Foundation. The course was developed for nurses working in intensive care units, coronary care units, emergency departments, and other areas encompassing critical care. As of July 2008, 459 nurses had attended one of the five national training programs.

In February 2007, with funding provided by the California HealthCare Foundation, the project team adapted the core curriculum to develop a Geriatric-specific training course, addressing the needs of geriatric nurses who work in long-term care and skilled nursing facilities. As of July 2008, 368 nurses had attended one of the four courses nation-wide. The Archstone Foundation provided funding through 2010.

The strategic plan for ELNEC, issued in July 2009, laid out eight goals, progress to date and future strategies. The goals are:

  1. Undergraduate and Graduate Education: Integrate palliative care content in undergraduate and graduate nursing education (Masters, DNP and PhD) and strengthen faculty as educators in palliative care.
  2. Continuing Education: Improve the knowledge of practicing nurses in palliative care through continuing education provided by ELNEC trainers.
  3. Pediatric Palliative Care: Prepare educators in pediatric settings to improve palliative care for children and families through nursing education.
  4. ELNEC International: Host international ELNEC courses and disseminate curriculum to extend our global work.
  5. ELNEC Critical Care: Improve palliative care in critical care settings through the education of nurses.
  6. ELNEC Geriatrics: Improve Palliative Care in Geriatric care settings including acute care, long term care and hospice care through the education of nurses.
  7. Develop and Implement the ELNEC-Veterans Project.
  8. Continue support of ELNEC Trainers post course.

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GRANT DETAILS & CONTACT INFORMATION

Project

End-of-Life Nursing Education Consortium (ELNEC)

Grantee

American Association of Colleges of Nursing (Washington,  DC)

  • Nursing Faculty Development in End-of-Life Care
    Amount: $ 2,224,543
    Dates: February 2000 to July 2003
    ID#:  037617

  • Amount: $ 846,997
    Dates: January 2001 to December 2002
    ID#:  040766

  • Evaluation of Nursing Faculty Development in End-of-Life Care
    Amount: $ 202,825
    Dates: January 2002 to December 2002
    ID#:  043977

  • Transition Support for the End-of-Life Nursing Education Consortium
    Amount: $ 366,987
    Dates: July 2003 to September 2004
    ID#:  044105

  • Amount: $ 33,012
    Dates: September 2003 to September 2004
    ID#:  048733

Contact

Pamela Malloy, R.N., M.N.
(202) 463-6930
pmalloy@aacn.nche.edu

Grantee

City of Hope National Medical Center (Duarte,  CA)

  • Development of a Pediatric Version of the End-of-Life Nursing Education Consortium Project
    Amount: $ 32,700
    Dates: November 2002 to September 2003
    ID#:  046803

Contact

Betty R. Ferrell, R.N., Ph.D.
(626) 359-8111
bferrell@coh.org

Web Site

http://www.aacn.nche.edu/elnec

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

End-of-Life Nursing Education Consortium Advisory Board

Marty Ayers, Ph.D., R.N.
Executive Director
Hospice and Palliative Nurses Association, National Office
Pittsburgh, Pa.

Geraldine Bednash, Ph.D.
Executive Director
American Association of Colleges of Nursing
Washington D.C.

Christine Cody, R.N.C., M.S.N.
Director, Professional and Regulatory Affairs
National Hospice and Palliative Care Organization
Alexandria, Va.

Patrick Coyne, R.N., M.S.N.
Medical College of Virginia Hospital, Massy Cancer Center
Richmond, Va.

Audrey Drake, R.N., M.S.N.
Acting Chief Consultant
Nursing Strategic Healthcare Group
Department of Veterans Affairs
Washington, D.C.

Kathy Egan, M.A., B.S.N., R.N.
Vice President
Hospice Institute of the Florida Suncoast
Largo, Fla.

Betty R. Ferrell, R.N., Ph.D.
Research Scientist
City of Hope National Medical Center
Department of Nursing Research and Education
Duarte, Calif.

Frank Ferris, M.D.
Center for Palliative Studies
San Diego Hospice Center for Palliative Studies
San Diego, Calif.

Marcia Grant, R.N., D.N.Sc.
Research Scientist
City of Hope National Medical Center
Department of Nursing Research and Education
Duarte, Calif.

Marianne L. Matzo, Ph.D., R.N.
Professor, Department of Health Services
New Hampshire Community Technical College
Manchester, N.H.

Paula Nelson-Marten, R.N., Ph.D.
Associate Professor, Oncology Nursing
School of Nursing
University of Colorado Health Sciences Center
Aurora, Colo.

Cynthia Miller-Murphy, R.N., M.S.N.
Executive Director
Oncology Nursing Certification Corporation
Pittsburgh, Pa.

Judy Paice, R.N., Ph.D.
Northwestern University Medical School
Division of Hematology/Oncology
Chicago, Ill.

Joan Panke, B.S.N., R.N.
Graduate Student
New York University School of Nursing
New York, N.Y.

Elizabeth Pitorak, M.S.N., R.N.
Director of the Hospice Institute
Hospice of the Western Reserve
Cleveland, Ohio

Anne Rhome, M.P.H., R.N.
Deputy Executive Director
American Association of Colleges of Nursing
Washington D.C.

Cynthia Rushton, D.N.Sc., R.N.
Johns Hopkins University School of Nursing
Baltimore, Md.

Colleen Scanlon, R.N., J.D.
Senior Vice President, Advocacy
Catholic Health Initiatives
Denver, Colo.

Deborah Sherman, Ph.D., R.N.
Program Coordinator, Advanced Practice Palliative Care Master's Program
New York University
New York, N.Y.

Denise Sheehan, R.N., M.S.N.
Coordinator, Palliative Care Program
Breen School of Nursing
Ursuline College
Pepper Pike, Ohio

Rose Virani, R.N., B.S.N.
Research Scientist
City of Hope National Medical Center
Department of Nursing Research and Education
Duarte, Calif.

Charles von Gunten, M.D., Ph.D.
Center for Palliative Studies
San Diego Hospice Center for Palliative Studies
San Diego, Calif.

Frances Weed, M.S.N., R.N.
Director, Special Projects
American Association of Colleges of Nursing
Washington D.C.

Anne Wendt, Ph.D., R.N.
NCLEX Content Manager
National Council of State Boards of Nursing
Chicago, Ill.

Gladys White, Ph.D., R.N.
Director, Center for Ethics and Human Rights
American Nurses Association
Washington, D.C.

Diana Wilkie, Ph.D., R.N.
Professor, School of Nursing
Department of Biobehavioral Nursing and Health Systems
University of Washington
Seattle, Wash.


Appendix 2

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

End-of-Life Nursing Education Consortium - Pediatric Palliative Care Advisory Board

James "Greg" Burns, R.N.
Nursing Director
Jason Program
Maine State Pediatric Hospice/Palliative Care Initiative
Portland, Maine

Margaret-Conway-Orgel, M.S.N.
Medical University of South Carolina/
National Association of Neonatal Nurse
Charleston, S.C.

Betty Davies, R.N., Ph.D.
Professor
University of California San Francisco
School of Nursing
San Francisco, Calif.

Susan Dulczak, M.S.N.
Children's Hospital of Philadelphia/
Association of Pediatric Oncology Nurses
Philadelphia, Penna.

Janet Duncan, M.S.N., R.N.
Children's Hospital
Pediatric Palliative Care Interdisciplinary Consult Service
Boston, Mass.

Nancy English, Ph.D., R.N., M.S.N.
Children's Hospital
Denver, Colo.

Carolyn Hames, M.N., R.N.
Assistant Professor, College of Nursing
University of Rhode Island
Kingston, R.I.

Cathy Haut, M.S., C.P.N.P., C.C.R.N.
Pediatric Nursing Certification Board
Pediatric Nurse Practitioner
Children's Hospital
Medical Center of Akron
Akron, Ohio

Melody Hellsten, R.N., M.S., P.N.P.
Pediatric Nurse Practitioner
Texas Children's Cancer Center and Hematology Service
Houston, Texas

Pamela Hinds, Ph.D., R.N.
Director of Nursing Research
St. Jude's Children's Hospital
Memphis, Tenn.

Marilyn Hockenberry, Ph.D., R.N.
Director, Center for Clinical Research
Nurse Scientist, Texas Children's Hospital
Houston, Texas

Sue Huff, R.N., M.S.N.
Director, Essential Care Pediatric Program
Center for Hospice and Palliative Care
Cheektowaga, N.Y.

Hollye Harrington Jacobs
McLean Center for Clinical Medical Ethics
University of Chicago Children's Hospital
Chicago, Ill.

Dolores Jones, Ed.D., R.N., C.P.N.P.
National Association of Pediatric Nurse Practitioners
Jacksonville, Fla.

Carole Kenner, D.N.S., R.N.C.
University of Illinois at Chicago College of Nursing, Neonatal Nursing
National Association of Neonatal Nurses
Buffalo Grove, Ill.

Mary Layman-Goldstein, R.N., M.S.
Memorial Sloan-Kettering Cancer Center
Supportive Care Program, Pain and Palliative Care Service
New York, N.Y.

Tiffany Levinson, R.N., M.S., F.N.P.
Pediatric Consultant
Evanston, Ill.

Liz Sumner, R.N., B.S.N.
Children's Program Director
San Diego Hospice
San Diego, Calif.

Christy Torkildson, R.N., M.S.N.
Program Director
George Mack Children's Hospital
Oakland, Calif.

Lois Van Cleve, Ph.D., R.N.
Loma Linda University
School of Nursing
Loma Linda, Calif.

Elizabeth Voyles, R.N.
Children's Hospital of Michigan
Society of Pediatric Nurses
Canton, Mich.

Marlene Walden, Ph.D. R.N.C., N.N.P.
Neonatal Nurse Practitioner
Texas Children's Hospital
Houston, Texas


Appendix 3

End-of-Life Nursing Education Consortium - Module Overviews

Core Curriculum

Module 1: Nursing Care at the End of Life
This module creates the foundation for the ELNEC-Core curriculum. It is an overview of the need to improve end-of-life care and the role of nurses in end-of-life care. Basic principles of palliative care are presented within a quality-of-life framework.

Module 2: Pain Management
This module reviews principles of pain assessment and management with a focus on pain at the end of life.

Module 3: Symptom Management
This module builds on Module 2: Pain Management, by addressing other symptoms common at the end of life, and the role of the Advanced Practice Nurse in managing these symptoms.

Module 4: Communication
This module emphasizes the importance of good communication in end-of-life care. The complexities of communicating with patients and families at this critical time are described along with suggestions for care.

Module 5: Ethical Issues in Advanced Practice Nursing
This module discusses some of the key ethical issues and legal concerns in end-of-life care and resources to address these in practice.

Module 6: Cultural Considerations in Palliative Care
This module reviews dimensions of culture that influence palliative care. Assessment of culture is emphasized as essential to adequate communication and in providing culturally sensitive care.

Module 7: Last Hours of Life
This module focuses on care at the actual time of death, emphasizing the preparation necessary to insure the best care at this critical event in the trajectory of illness.

Module 8: Loss, Grief & Bereavement
This module addresses the challenging aspects of loss, grief and bereavement of patients and families as well as the loss experiences of health care professionals.

Module 9: Achieving Quality Care at the End of Life
This module focuses on the role of the nurse in achieving quality care at the end of life by reviewing limitations in existing systems and creating change.

Pediatric Curriculum

Module 1: Introduction to Pediatric Palliative Nursing Care
This module creates the foundation for the ELNEC-Pediatric Palliative Care (ELNEC-PPC) curriculum. It is an overview of the need to improve care and the role of nurses as members of an interdisciplinary team in providing quality care. Basic principles of pediatric palliative care are presented within a quality-of-life framework.

Module 2: Special Considerations in Pediatric Palliative Care
This module focuses on the foundation of pediatric palliative care by highlighting the essential elements involved with caring for seriously ill children as well as addressing each child's multifaceted uniqueness.

Module 3: Communication
This module emphasizes the importance of good communication in pediatric palliative care. The complexities of communicating with children and families at this critical time are described along with suggestions for care.

Module 4: Ethical/Legal Issues
This module discusses some of the key ethical issues and legal concerns in palliative care for children and resources to address these in practice.

Module 5: Cultural Considerations in Pediatric Palliative Care
This module reviews dimensions of culture that influence pediatric palliative care. Assessment of culture is emphasized as essential to adequate communication and in providing culturally sensitive care.

Module 6: Pain Management
This module reviews basic principles of pain assessment and management in infants, children and adolescents with a focus on pain in palliative care.

Module 7: Symptom Management
This module builds on Module 6 (Pain Management) by addressing other symptoms common in children with life-threatening illnesses.

Module 8: Care at the Time of Death
This module focuses on care at the actual time of a child's death, emphasizing the preparation necessary to ensure the best care at this critical event in the trajectory of illness.

Module 9: Loss, Grief & Bereavement
This module addresses the challenging aspects of loss, grief and bereavement of children and families as well as the loss experiences of health care professionals.

Module 10: Models of Excellence in Pediatric Palliative Care
This module focuses on the role of nurses in achieving quality care for children living with life-threatening conditions and their families by reviewing limitations in existing systems and opportunities for change.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Articles

Coyne PJ, Lyne ME and Watson AC. "Symptom Management in People with AIDS." American Journal of Nursing, 102(9): 48–56, 2002. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Egan KA and Arnold RL. "Grief and Bereavement Care." American Journal of Nursing, 103(9): 42–52, September 2003. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Ferrell BR and Rhome A. "National Effort Launched to Improve End-of-Life Care." Nursing Spectrum, 2(9): 20–21, 2001.

Ferrell BR, Grant M and Virani R. "Emergency Nursing Publications Challenged to Include End-of-Life Content." Journal of Emergency Nursing Online, 27(5), 2001.

Ferrell BR. "Caring at the End of Life." Insight (online Journal of the American Society of Ophthalmic Registered Nurses), 26(4), 2001. Appears online.

Ferrell BR, Grant M and Virani R. "Nurses Urged to Address Improved End-of-Life Care in Textbooks." (Letter to the Editor). Oncology Nursing Forum, 28(9): 1349, 2001. Also available online.

Ferrell BR, Grant M and Virani R. "Letter to the Editor." Journal of Pediatric Nursing, 16(6): 390–391, 2001.

Ferrell BR, Grant M and Virani R. "Letter." Journal of Hospice and Palliative Nursing, 4(1): 16–17, 2002.

Ferrell BR and Coyle N. "An Overview of Palliative Nursing Care." American Journal of Nursing, 102(5):26–31, May 2002. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Ferrell BR, Virani R, Grant M, Rhome A, Malloy P, Bednash G and Grimm M. "Evaluation Of The End-Of-Life Nursing Education Consortium Undergraduate Faculty Training Program." Journal of Palliative Medicine, 8(1): 107–114, 2005. Abstract available online.

Griffie J, Nelson-Marten P and Muchka S. "Acknowledging the 'Elephant': Communication in Palliative Care." American Journal of Nursing, 104(1): 48–57, January 2004. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Malloy P, Ferrell BR, Virani R, Uman G, Rhome AM, Whitlatch B and Bednash G. "Evaluation of End-of-Life Nursing Education for Continuing Education and Clinical Staff Development Educators." Journal of Nurses Staff Development, 22(1): 31–36, 2006. Abstract available online.

Matzo M, Sherman D, Penn B and Ferrell B. "The End of Life Nursing Education Consortium (ELNEC) Experience." Nurse Educator, 28(6): 266–270, 2003. Abstract available online.

Matzo ML, Sherman DW, Mazanec P, Barber MA, Virani R and McLaughlin MM. "Teaching Cultural Considerations at the End of Life: End of Life Nursing Education Consortium Program Recommendations." (Module 5) Journal of Continuing Education in Nursing, 33(6): 270–278, 2002. Abstract available online.

Matzo ML, Sherman DW, Sheehan DC, Ferrell BR and Penn B. "Communication Skills for End-of-Life Nursing Care: Teaching Strategies from the ELNEC Curriculum." (Module 6) Nursing Education Perspectives, 24(4): 176–183, 2003. Abstract available online.

Matzo ML, Sherman DW, Lo K, Egan KA, Grant M and Rhome A. "Strategies for Teaching Loss, Grief, and Bereavement." (Module 7) Nurse Educator, 28(2): 71–76, 2003. Abstract available online.

Matzo ML, Sherman DW, Nelson-Marten P, Rhome A and Grant M. "Ethical and Legal Issues in End-of-Life Care: Content of the End-of-Life Nursing Education Consortium Curriculum and Teaching Strategies." (Module 4) Journal for Nurses in Staff Development, 20(2): 59–66, 2004. Abstract available online.

Mazanec P and Tyler MK. "Cultural Considerations in End-of-Life Care: How Ethnicity, Age, and Spirituality Affect Decisions When Death is Imminent." American Journal of Nursing, 103(3): 50–58, 2003. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Paice JA. "Managing Psychological Conditions in Palliative Care." American Journal of Nursing, 102(11): 36–42, 2002. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Panke JT. "Difficulties in Managing Pain at the End-of-Life." American Journal of Nursing, 102(7): 26–33, 2002. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Pitorak EF. "Care at the Time of Death." American Journal of Nursing, 103(7): 42–52, 2003. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Scanlon C. "Ethical Concerns in End-of-Life Care." American Journal of Nursing, 103(1): 48–55, 2003. Also appears at www.aacn.nche.edu/ELNEC/ajnarticles.htm or www.ajnonline.com.

Sherman DW, Matzo ML, Panke J, Grant M and Rhome A. "End-of-Life Nursing Education Consortium Curriculum: An Introduction to Palliative Care." (Module 1) Nurse Educator, 28(3): 111–120, 2003.

Sherman DW, Matzo ML, Paice JA, McLaughlin M and Virani R. "Learning Pain Assessment and Management: A Goal of the End-of-Life Nursing Education Consortium (ELNEC)." (Module 2) Journal of Continuing Education in Nursing, 35(3): 107–120, 2002. Abstract available online.

Sherman DW, Matzo ML, Rogers S, McLaughlin M and Virani R. "Achieving Quality Care at the End of Life: A Focus on the ELNEC Curriculum." (Module 8) Journal of Professional Nursing, 18(5): 255–262, 2002. Abstract available online.

Sherman DW, Matzo ML, Coyne P, Ferrell BR and Penn BK. "Teaching Symptom Management in End-of-Life Care: The Didactic Content and Teaching Strategies Based on the End-of-Life Nursing Education Curriculum. Journal for Nurses in Staff Development, 20(3): 103–115, 2004. Abstract available online.

Sherman DW, Matzo ML, Pitorak E, Ferrell BR and Malloy P. "Preparation and Care at the Time of Death: Content of the ELNEC Curriculum and Teaching Strategies." (Module 9) Journal for Nurses in Staff Development, 21(3): 93–101, 2005. Abstract available online.

Virani R and Sofer D. "Improving the Quality of End-of-Life Care." American Journal of Nursing, 103(5):52–60, 2003. Also appears at www.aacn.nche.edu/ELNEC/ajn.htm or www.ajnonline.com.

Audio-Visuals and Computer Software

ELNEC Course Guides, CD-ROM provided to all course participants and course faculty. Curriculum materials include preferred slides for each module and other graphics for use by editors. Duarte, Calif.: City of Hope National Medical Center, 2002–03.

World Wide Web Sites

www.aacn.nche.edu/elnec. The Web site of the End-of-Life Nursing Education Consortium (ELNEC) provides information about end-of-life palliative care to nurse trainers and the public. Washington: American Association of Colleges of Nursing.

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Report prepared by: Jayme Hannay
Reviewed by: Kelsey Menehan
Reviewed by: Molly McKaughan
Program Officer: Rosemary Gibson
Program Officer: Michelle Larkin

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