Welcome to the Winter 2014 Edition!
The End-of-Life Nursing Education Consortium (ELNEC) is pleased to bring you this issue of ELNEC Connections, a quarterly newsletter to showcase efforts in end-of-life nursing education and practice. This newsletter spotlights project developments and provides resources that may be useful to you as an ELNEC trainer. ELNEC is a national education program to improve end-of-life care by nurses.Today, over 17,500 nurses and other healthcare providers have attended a national train-the-trainer course. ELNEC has been presented in 78 countries and translated into 6 languages. The project, which began in February 2000, was funded by a major grant from the Robert Wood Johnson Foundation. Additional funding has been received from the National Cancer and Open Society Institutes, US Department of Veterans Affairs, Milbank Foundation for Rehabilitation and the Aetna, Archstone, Oncology Nursing, Bristol-Myers Squibb, Cambia Health, and California Healthcare Foundations. ELNEC is administered through a partnership between the American Association of Colleges of Nursing (AACN) and the City of Hope (COH). 
Note:  ELNEC’s New Website Link:  https://www.aacn.nche.edu/elnec
In this edition, read about:
  • 2014 Schedule of ELNEC Courses: The Most Ever!
  • 2013 ELNEC Award Winners Announced
  • First Doctor of Nursing Practice Palliative Care Train-the-Trainer Course
  • Update on ELNEC-International Fund
  • Incredible Stories of ELNEC Trainers Making A Difference Throughout the World

“LIKE” ELNEC on Facebook
We are working to get 1,000 “likes” on the ELNEC Facebook page. Once we get to 1,000, a drawing of all the people who have “liked” ELNEC will take place, and two winners will be chosen for FREE registration to any future national ELNEC train-the-trainer course

Check out the ELNEC Facebook page at www.facebook.com/ELNECpalliativecareeducation
National and International ELNEC Train-the-Trainer Courses to be Held in 2014
Record-Breaking Number of ELNEC-International Courses To Be Held This Year

ELNEC Summit*

April 10-11 - Dallas, TX


May 7-8 - Durham, NC

ELNEC-International & ELNEC-Pediatric Palliative Care

May 13 - 22 - Liberia

ELNEC-Pediatric Palliative Care

June 5 - 15 - Taiwan

ELNEC International

June 11 - 13 - Ankara, Turkey
June 18-19 - St. Paul, MN

Integrating Palliative Oncology Care into
DNP Education and Clinical Practice
(Funded by NCI)

June 26-27 - Washington, DC

July 29-30 - Chicago, IL

ELNEC-Pediatric Palliative Care**

July 29-30 - Chicago, IL


August 21-22 - Portland, OR

Pre-Conference to the International Conference
on Cancer Nursing (ICCN)

September 7 - Panama City, Panama
ELNEC (Leadership Seminar) September 22 - 26 - Brasov, Romania

ELNEC-Critical Care

September 27 - 28 - Kyoto, Japan


October 21-22 - Orlando FL

*ELNEC Summit provides 4 ELNEC train-the-trainer courses simultaneously (ELNEC-Core, Pediatric Palliative Care, Critical Care, and Geriatric).
**ELNEC Courses held in partnership with the Hospice and Palliative Nurses Association (HPNA).
For more information and/or to register, go to www.aacn.nche.edu/ELNEC
Three or more attendees from the same institution will receive a $50 reduction in the registration fee per participant. 
2013 ELNEC Award Winner Announced
Twelve ELNEC trainers have just been chosen as award winners for their commitment to improve palliative care in their institution and throughout their community. These trainers represent 7 states (AL, CA, KS, NY, OK, TX, VA) and 2 international countries (Saudi Arabia and Germany). They are staff nurses, teachers, and administrators who work in oncology, high-risk obstetrics, critical care, palliative care, and with veterans.  Below is a very brief overview of their exceptional work.  Further information on these ELNEC trainers can be found at www.aacn.nche.edu/elnec/elnec-award-winners
In 2013, INTEGRIS Health’s Clinical Educator, Kacy Aderhold, BSN, RN-BC and Palliative Care Coordinator, Debbi McCullock, MS, APRN-CNP, RN-BC partnered to offer ELNEC courses to improve access to quality palliative care through nursing education. So far, they have educated 139 nurses, social workers, case managers, and chaplains using the ELNEC-Core curriculum at their Oklahoma City, OK hospital.
Debbie James, MSN, RN, CNS, CCRN is the Lead Nursing ELNEC Instructor/ Facilitator at MD Anderson Cancer Center in Houston, TX and is fortunate to direct ELNEC courses in additional areas throughout Texas.  In 2012, Debbie envisioned collaboration among all Texas ELNEC trainers and initiated the creation of a strong connection with one another by creating the ELNEC-Texas Coalition.  Debbie contacted each of the Texas trainers listed on the ELNEC website and asked for their input in organizing a collaborative effort to participate in conference calls throughout the year, in an effort to improve palliative care throughout the state of Texas.  They are busy marketing the ELNEC Summit, which will be held in Dallas in April 2014. 
Debra Rodgers, BSN, RN OCN, CHPN and Beth Calmes, MSN, RN are oncology nurses at Cottage Hospital in Santa Barbara, CA.  Debra attended her first ELNEC Train-the-Trainer Course in 2006, and Debra and Beth both attended the ELNEC Train-the-Trainer Course in Anaheim in February, 2013, where they presented a qualitative research study exploring family members’ experiences of a Bathing and Honoring practice after their loved one died on the oncology unit.  To date, Debra and Beth have trained several medical/surgical patient care units within the hospital as well as two intensive care units.  Together, they have changed a culture.
Kathy Davis, PhD, RN, has had the opportunity to provide care to children and families at the University of Kansas Medical Center, Department of Pediatrics for over 30 years, first as a pediatric school teacher and more recently as the director of pediatric palliative care.  Initially, she and her team reinvented the wheel with each child and family, in an effort to desperately figure out how to best do this thing called “pediatric palliative care.”  Then came ELNEC-Pediatric Palliative Care!  “After my training in 2007, I was eager to share the ELNEC-Pediatric Palliative Care curriculum with my colleagues and since 2009, we have offered the curriculum 1 -2 times per year in an effort to train all nurses in our High Risk Obstetric program, the 30-bed neonatal intensive care unit, and the 30-bed pediatric palliative care unit.”
Lauretta Huff, RN works at the Central Alabama Veterans HCS in Tuskegee, AL. In 2013, she taught 4 ELNEC-For Veterans and 2 ELNEC-for Veterans/Critical Care training courses.   “The ELNEC-for-Veterans course materials have provided a standardized set of training materials with various assessment, planning, implementation, and evaluation tools; enabling our staff to provide quality, evidence-based palliative care to our nation’s heroes,” stated Lauretta.    Staff from various settings attended the ELNEC courses, including staff from long-term care, ambulatory, mental health, critical care, chaplain service, recreation therapy. 
Sr. M. Peter Lillian Di Maria, O.Carm is the Director of the Avila Institute of Gerontology, Inc., Carmelite Sisters for the Aged and Infirm in Germantown, NY. Sister Peter found the ELNEC-Geriatric course to be very thorough and was able to integrate the philosophy of the Carmelite Sisters in the materials and to develop a palliative care program that is specific for geriatric care. The first training she led was attended by 64 participants. This training, along with the support of her Community’s Central Ethics Committee, led to the development of a pilot program that is studying how long-term care facilities can implement policies and procedures that will sustain Palliative Care programs.  Six facilities are participating in the study.
Janet Withrow, BSN, RN, CCRN is a critical care nurse  at Bon Secours Memorial Regional Medical Center in Mechanicsville, VA, and she believes palliative care is vital for those patients in her units with serious, life-threatening conditions.  After completing her ELNEC-Critical Care training, she was impressed with how it emulated her institution’s newly adapted care delivery model of relationship-based care. “Many of the new staff coming into critical care have never had a patient die on them so there was definitely a need for end-of-life education,” stated Janet. In collaboration with her area’s college of nursing and local chapter of the American Association of Critical Care Nurses, she was able to facilitate an ELNEC-Critical Care train-the-trainer course. From that point on, she worked with her palliative care team to set up and run training programs on a regular basis.
Ingrid Porter, MS, RN, AOCN is a Professional Development & Training Advisor at Johns Hopkins ARAMCO Healthcare, Office of Academic Affairs, in Saudi Arabia, where there are few facilities that provide a semblance of palliative care.  For a variety of reasons many patients seek medical care when they are in the advanced stages of various diseases. Motor vehicle accidents are also prevalent, leaving many young adults, especially men, to cope with devastating, life-changing conditions. Palliative care is central to improving the quality of life for these patients. Ingrid educates healthcare providers from many different countries and stresses the importance of honoring the cultures and traditions of the patients in their care. To date, Ingrid has educated over 300 nurses in Saudi Arabia.  
Silke Walter and Bea Werner are nurses who work in the Palliative Care Department at the University Medical Center in Freiburg, Germany.  They began their work with ELNEC in the summer of 2010 when their Medical Director, Professor Gerhild Becker came to the United States to learn more about ELNEC and  obtain permission to translate the curriculum.  To date, Silke and Bea have translated both ELNEC-International and ELNEC-Geriatric into German.  Silke and Bea have found that nurses who have completed ELNEC training are able to handle palliative care patients more appropriately and feel more comfortable in these situations.  
First Doctor of Nursing Practice (DNP) Palliative Care Course Offered
Train-the-Trainer Course Funded by the National Cancer Institute
On April 1, 2013, City of Hope Medical Center, in partnership with AACN received a 5-year grant for the purpose of educating DNP faculty and clinicians in palliative care.  The project, titled Integrating Palliative Oncology Care Into Doctor of Nursing Practice (DNP) Education and Clinical Practice will provide education to these future nursing leaders, as care for those with cancer continues to be complex and financially burdensome.  The first course, which was held February 27-28 in Glendale, CA, provided participants with resources to assist in integrating evidence-based palliative care content into DNP program curricula and to prepare DNP graduates in providing evidence-based palliative care in a variety of oncology settings. This program is built around the 2013 National Consensus Project’s (NCP) Clinical Practice Guidelines for Quality Palliative Care, the 2013 Institute of Medicine (IOM) Report titled Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, and the AACN Essentials of Doctoral Education for Advanced Nursing Practice. The second course will be held June 26-27, 2014 in the Washington, DC area.  The application, overview, agenda and press release are located at www.aacn.nche.edu/elnec.  Further information for two other national courses will be available after July 15, 2014. 
AACN Provides $20,000 to Expand the Work of ELNEC-International
ELNEC Trainers Have Provided Over $4,200 to Match This Gift
AACN's Fall Semiannual Meeting the Board of Directors agreed to provide $20,000 to the ELNEC Project, in an effort to expand the work of ELNEC-International.  The AACN Board asked that ELNEC trainers be given opportunities to match their gift of $20,000.  A request went out via email to all ELNEC trainers in early December 2013 and over $4,200 was donated by ELNEC trainers.  This year alone, a record-breaking 8 international courses will be held in the following countries:  Ukraine, Liberia, Taiwan, Turkey, Panama, Romania, Japan, and Austria.  Courses in each of these countries will be funded through generous philanthropic gifts from friends/trainers of ELNEC or grants.  Despite being able to fund each of the 8 courses listed above this year, there are still requests that have come through the ELNEC Project Office.  Examples include:
  • Bangladesh
  • Belize
  • Kenya
  • Swaziland
  • Miscellaneous—Provide registration fees for people to come to the US for national ELNEC train-the-trainer courses, send ELNEC CDs to nurses and physicians in other countries who need this education, update the Spanish and Russian translations of ELNEC-International.
Our goal is to be able to accommodate the requests listed above in 2015. If you would like to make a tax-deductible gift to the ELNEC-International fund, please fill-out the donation form at www.aacn.nche.edu/elnec.
Ladybug House:  A Place That Will Provide Compassionate Care to Seriously Ill Children and Respite for Their Families
ELNEC-Pediatric Palliative Care Trainer Begins to Make Plans to Build
In spite of the vast need, there are currently only two pediatric palliative care freestanding homes in the United States: The George Marks House in San Leandro, CA and The Ryan House in Phoenix, AZ. In comparison, there are 49 pediatric and young adult palliative care homes in the United Kingdom, and one in almost every major city in Canada.  Less than 1% of children and young adults needing this service receive it.  ELNEC-Pediatric Palliative Care trainer, Suzanne Gwynn believes that the US can and should do better in caring for children with serious illness.  So, she has decided to move forward with a vision she has had for a long time—build a home in the state of Washington for children and their families who need this type of extra support.  

Ladybug House is a nonprofit organization, still in the inception phase, whose mission is to build and operate a residential facility that offers end-of-life care to children and young adults with life limiting illnesses, and respite to families. Suzanne's vision is to support children and their families in a community-based, homelike environment with family suites, a variety of therapy rooms for music, art and sensory exploration, a media facility, areas for meditation and reflection, a physical therapy/ heated spa area for pain management, outdoor playground with ground level merry go-round for wheel chair access, cradle swings for children who can no longer sit up, and even a kennel for pets. Suzanne also envisions a family-style kitchen where guests and family are welcome to prepare their own favorite foods and a fulltime cook who will also be present.  For further information about this proposed work, contact Suzanne at  Suzanne@ladybughouse.org  and visit the Ladybug House Facebook page.

Betty Ferrell Receives the Episteme Laureate Award from Sigma Theta Tau
Betty Ferrell, PhD, MA, RN, FAAN, FPCN, CHPN, Principal Investigator of ELNEC, became the 13th recipient of the Episteme Laureate award, regarded by many as nursing’s equivalent to the Nobel Prize.  Betty was given this award in Indianapolis, IN, during the 42nd biennial Sigma Theta Tau Convention in November, 2013.  Betty took this opportunity to promote nurses who provide palliative care through her plenary presentation entitled, The Global Imperative of Palliative Care. This prestigious award was given to Betty by Donna Namath (right in the picture), executive director of The Baxter International Foundation. 
Retirement?  No Way for These Two ELNEC Trainers
You have had a very fulfilling nursing career and your husband has had a successful medical practice.  You decide that retirement is not for you, so though you give up your regular “day job” you decide on a “Part 2” for the next chapter of your life and you travel to The Kingdom of Swaziland in Southern Africa.  This is exactly what Al and Kathleen Hartmann did several years ago, and they are still adding numerous chapters to their lives.  One of those chapters includes attending the ELNEC-APRN course in Washington, DC in November 2013.  While attending the course, they received many resources to take back to Swaziland to assist in their educational efforts with amazing staff who care for the most vulnerable throughout Swaziland.  For the past few years, Al and Kathleen have left the comforts of their home in New York City and have travelled to Swaziland for 6-months of volunteer work per year.  They work in a country with a population of over 1 million, with 78% of the population living in rural areas and 69% below the poverty line. Swaziland has the highest HIV/AIDS and tuberculosis (TB) rates in the world with co-infection a particular challenge. Approximately 80% of TB patients are co-infected with HIV. Poverty, lack of clean water, and poor nutrition add to this devastating situation.  Al and Kathleen volunteer most of their time at the Good Shepherd Mission Hospital, working with a team to provide care to approximately 210,000 of the poorest and sickest people in the country. A Home Based Care (HBC) Team was organized in 2001 in order to bring compassionate care to patients in their homesteads. Resources are very limited, but Al and Kathleen and others at the Good Shepherd Mission Hospital are working with the Swazi Government to increase available analgesics (morphine) and supplies.  Today, Kathleen and Al are working with the HBC, as they have done since 2001, supporting and bringing hope to those in Swaziland who so desperately need good palliative care.  The ELNEC Project hopes to send a team to Swaziland to assist with any educational needs.  Al and Kathleen are pictured above (first row, 3rd and 4th from the right).
Navy Veteran and ELNEC Faculty Continues Volunteer Work Through Project HOPE
For most people, speaking about death and dying is an uncomfortable conversation that is avoided rather than confronted. But Project HOPE volunteer, Carma Erickson-Hurt, has traveled around the world to assist healthcare professionals to better understand patient needs at this critical stage of their lives.  On December 2, 2013, Carma joined a team of nineteen Project HOPE volunteers on Panay Island.  The island was in the early stages of recovering from a direct hit by Typhoon Haiyan, which caused widespread death and destruction across the southern Philippines.  Carma used ELNEC to provide a series of presentations for the staff at Tapaz Regional Hospital on the proper way to manage and support the dying patient. Death during the storm came quickly to most. In the aftermath of the storm the local caregivers had to be prepared to face the reality of death due to disease and starvation.  For more information about this project, click here. Carma can be contacted directly at ecarma@hotmail.com.
ELNEC Presented in Pre-Conference for the First Asian Oncology Nursing Society Meeting
In November 2013, Betty Ferrell and Denice Economou traveled to Bangkok, Thailand to provide a palliative care pre-conference at the inaugural Asian Oncology Nursing Society (AONS) meeting, along with colleagues from MakatiMed.  This meeting was remarkable, as over 460 nurses from various Asian countries attended this first AONS meeting, with 45 of them attending the palliative care pre-conference.  Ayda Nambayan, PhD, RN, a long-time ELNEC-Pediatric Palliative Care trainer and consultant at MakatiMed coordinated this event. 
Did You Know?
In the first 1 ½ months of this year, the ELNEC Project Office has received 55 notification forms from ELNEC trainers, detailing upcoming ELNEC courses they are hosting.  These courses have been/will be held in 22 states, plus 3 international countries (e.g. Philippines, Singapore, and Vietnam).  The graph below shows that while the number of ELNEC trainers increases each year, the number of courses being held also escalates.
If you are planning to provide an ELNEC course, you must notify the ELNEC Project Office by submitting a notification form. To obtain this form and to review other resources on how to plan an ELNEC course, go to http://www.aacn.nche.edu/elnec/planning-elnec-course.
Any questions?  Contact Pam Malloy at pmalloy@aacn.nche.edu
We are interested in your thoughts and suggestions about end-of-life nursing issues. What would you like to see in this newsletter? Do you have a story to share about how end-of-life nursing education has made a difference for your patients and their families?
Please forward your suggestions or comments to:

Pam Malloy
ELNEC Project Director
202-463-6930 ext. 238
End-of-Life Nursing Education Consortium (ELNEC)