Welcome to the Fall 2012 Edition!
The End-of-Life Nursing Education Consortium (ELNEC) is pleased to bring you the Fall 2012 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 15,000 nurses and other healthcare providers have attended a national train-the-trainer course. ELNEC has been presented in 74 international 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, and Aetna, Archstone, Oncology Nursing, Bristol-Myers Squibb, Milbank for Rehabilitation, and California Healthcare Foundations, and the US Department of Veterans Affairs. ELNEC is administered through a partnership between the American Association of Colleges of Nursing (AACN) and the City of Hope (COH).
In this edition, read about:
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Top Priority for 2013:
Training Advanced Practice Registered Nurses (APRNs) in Palliative Care
Many APRNs are Moving into Palliative Care Leadership, Practice, Education, and Research Roles
There are many palliative care teams across the US being led by advanced practice registered nurses (APRNs). These APRNs are key team members and exemplify commitment to their varied roles in not only leadership, but practice, education, and research, too. Plans are being made now for the development of a new ELNEC curriculum that will meet the specific needs of these nurses. Connie Dahlin and Patrick Coyne are the lead consultants on this project. In addition, a separate tract for those who work in pediatric palliative care will have their own unique training, with Amy Corey and Cheryl Thaxton acting as the lead consultants for the pediatric modules. Further information about this new course, including a registration form, overview, agenda, faculty listing, flyer, and FAQ are available at www.aacn.nche.edu/ELNEC. For a listing of the 2013 ELNEC-APRN courses, see below.
Six National ELNEC Train-the-Trainer Courses to be Held in 2013
  • ELNEC-Summit:*  February 21-22, Anaheim, CA

  • ELNEC-APRN:  April 4-5, Anaheim, CA

  • ELNEC-Core:**   May 14-15, St. Louis, MO

  • ELNEC-Core & ELNEC-Pediatric Palliative Care:**  July 30-31, Boston, MA
    (both courses held simultaneously)

  • ELNEC-Core:**  October 8-9, Lake Buena Vista (Orlando), FL

  • ELNEC-APRN & ELNEC-Critical Care:  November  5-6, Washington, DC
*ELNEC Summit—ELNEC-Core, Pediatric Palliative Care, and Critical Care train-the-trainer courses are held simultaneously. 
**ELNEC Courses held in partnership with the Hospice and Palliative Nurses Association (HPNA).
Note: Three or more attendees from the same institution will receive a $50 reduction in the registration fee per participant for all 2013 courses.
For more information and/or to register, go to www.aacn.nche.edu/ELNEC
Over 675 Nurses and Other Healthcare Professionals Recieve National ELNEC Training in the US in the Past Six Months
ELNEC Trainers Hold 192 Regional Courses and Reach Over 5,460 in 2012
Four national ELNEC train-the-trainer courses were held over the summer and into the fall in 2012. In June, the final ELNEC-For Veterans and ELNEC-For Veterans Critical Care courses, funded by the US Department of Veterans Affairs (VA) were held in Glendale, CA, with 127 attendees. In August and October, ELNEC-Summits were held with 417 participants in Washington, DC and Portland, OR, respectively. An ELNEC-Core course was held in partnership with the Hospice and Palliative Nurses Association (HPNA) with 71 participants.  Finally, an ELNEC-For Veterans course will be held on November 14 & 15 in San Antonio as a pre-conference to AACN's Baccalaureate Conference. This course, funded by the Milbank Foundation for Rehabilitation, provided funding for 60 nursing faculty to attend. There are currently 68 people registered for this course. 
In addition, ELNEC trainers have returned to their institutions and trained over 5,460 people in the first 10 months of this year, representing 192 courses in 31 states and in 9 international countries (Krygykystan, Mexico, Malaysia, Korea, Kenya, Puerto Rico, Japan, Austria, and Saudi Arabia). 
Heart Board Used to Inspire and Empower Nurses in Their Everyday Work
ELNEC-Pediatric Palliative Care trainer, Cheryl Thaxton teaches ELNEC frequently at Duke University Medical Center. One of the favorite exercises she likes to use is the “heart board.” She finds the board to be very effective in terms of getting the participants actively involved in an exercise that promotes inner healing and a connection with how patients inspire their caregivers. “We introduce this concept on the first day and ask the participants to write a brief statement or encouraging word/attribute that comes to mind with one or more of their patients with a serious, life-threatening illness.” Here are some samples of what nurses have written about their young patients: 
"My teacher, my guide and inspiration.”
"Strength, perseverance, joy.”
"Thanks for teaching me to slow down
and embrace the moment.”
"You always made me laugh and you taught me how to
play crazy 8 and I know that you are helping
to guide me to be a better nurse.”
It Just Takes One Idea to Make a Difference...
Two ELNEC Trainers Are Leading Efforts to Enhance Palliative Care
ELNEC Trainers frequently share ideas with the ELNEC Project Office about how to improve care for very sick patients and their families.  For example, Tercia Soares Sharpe, an ICU nurse and End-of-Life  educator at Inova Loudoun County Hospital in Leesburg, VA, wanted to honor patients who had died in the past year with a memorial service.  While the emphasis is always on the memory of those who have died, Tercia and her team have also benefited from this time, as it allows the healthcare providers opportunities to reminisce and think about the sacred work they do daily.  Family members of the deceased are grateful to come to the memorial service and see that the memory of their loved one continues. 
 Pictured from left to right, are those who work with Tercia to plan and organize the memorial services:  Denise Fortin, Tercia Soares Sharpe, Debbie Lassiter, and Cathy Williams. 
In addition, Casey Clapp, an ICU nurse at Seton Healthcare in Austin, TX, heard about comfort carts at the national ELNEC course in San Diego in 2011.  Casey returned to Seton and worked with his colleagues to develop the carts, repurposing crash carts, which are used to help meet the tremendous emotional and spiritual needs of their ICU patients and families.  They keep the carts stocked with body lotions, CDs, artificial candles, and bereavement resources.  They also put laminated pictures of sunsets in the windows of those ICU patients who are actively dying, reminding the staff to be quiet and respectful when entering the room.  Lastly, Casey writes a hand-written note to families after their loved one dies.  Other ICU staff sign the card, too. “The ICU encourages respectful, compassionate care for our patients and each other.  By the grace of God, all of us work together for the common good,” stated Casey. 
The Need for ELNEC-International Training Continues to Grow
ELNEC Courses Held in Saudi Arabia, Korea, Philippines, Japan, Kenya, Austria, and Krygykystan
When ELNEC originated in 2000, there was very little thought of providing ELNEC training anywhere other than in the United States (US).  Yet, twelve years later, ELNEC-International training is growing, with 7 ELNEC-International courses being held over the past 3 months.  Examples of these include:
At the Saudi Aramco Hospital – SAMSO in Dharhan, Saudi Arabia, ELNEC trainer, Ingrid Porter has been busy teaching ELNEC. Nursing Administration chose the first group of senior staff to attend the training. “The news about the value and life-changing training has spread like wild fire, and even the Arab men in the course wrote poems and stood and read them to the class,” stated Ingrid. Nurses who had difficulty talking to patients and families about do-not-resuscitate (DNR) status are now doing so with confidence. As a result, nursing administration signed up another 30 staff to attend the second course which was held in October 2012.    
This summer, Vanessa Battista and Joetta Wallace traveled to Seoul, Korea to hold the very first ELNEC-Pediatric Palliative Care (PPC) in Korea, thanks to the invitation from Dr. Hyun Sook Kim, Professor at the Department of Social Welfare, Korea National University.  Over 190 attended this training.  Dr. Kim and her colleagues have just translated/published ELNEC-Geriatric and are now working on translating ELNEC-PPC into Korean.
Betty Ferrell and Nessa Coyle traveled to the Philippines to train 500 nurses and other members of the interdisciplinary team.  In addition, they had the opportunity to teach a pain course for an additional 300 people at a nearby hospital.  They also met with almost all the deans of schools of nursing. In addition, they met with many physician leaders and hospital administrators as they plan palliative care education and services. 
Two national ELNEC-Core Train-the-Trainer courses were held in Osaka, Japan in May and July 2012. Due to the tremendous work of Dr. Sayaka Takenouchi, faculty at the Kyoto University Graduate School of Medicine and her team, there are now 535 ELNEC trainers throughout Japan.  This work has taken over six years.  Sayaka and her team have translated ELNEC-Core and ELNEC-Geriatric into Japanese.  Sayaka (pictured in the middle) is with two of her colleagues. 
In September, ELNEC trainer, Lee Mayer went to Nairobi, Kenya with a team and trained over 100 Kenyans in end-of-life-care.  “Every participant was receptive to this education, almost as if they couldn’t get enough,” stated Lee.  Many of the participants were ministers/pastors.  Kenyan pastors minister to the sick in outlying rural areas and their families.  Members of the team pictured from left to right: Don Smith, Annie Smith, George Kent, Lee Mayer, Debra Ming-Sun, Brooke Dufek.  
In October, Patrick Coyne, Connie Dahlin, Betty Ferrell, Polly Mazanec, and Nicoleta Mitrea participated in the 4th Open Society Institute’s (OSI) sponsored ELNEC-International train-the-trainer course in Salzburg, Austria.  Thirty-two (32) nursing and medical leaders in education and practice from Albania, Armenia, Tajikistan, and the Ukraine were competitively chosen to attend this week-long course.  These trainers have returned to Eastern Europe to embed ELNEC into current nursing curriculum and to change systems of care in an effort to promote improved palliative care. 
The very first interdisciplinary ELNEC course in Kyrgyzstan was held October 2012 in Issyk Kul.  Forty five professionals attended the 3 ½ day course, including nurses, physicians, representatives from the Ministry of Health and the Ministry of Social Care, as well as delegates from a variety of non-governmental organizations (NGOs).  International trainers included Nessa Coyle, Carma Erickson-Hurt, Judy Paice, and Jane Schicklau from the US, as well as Tamari Rukhadze, an oncologist and palliative care physician from Georgia.   “Given their enthusiasm and dedication, we anticipate a revolution in end-of-life care in this amazing country,” stated Judy. 
Overview of ELNEC Training in Eastern Europe Presented at the 17th ISNCC Conference in Prague, Czech Republic
Polly Mazanec and Pam Malloy attended the 17th International Society of Nurses in Cancer Care (ISNCC) conference in Prague, Czech Republic from September 8-11, 2012. Over 600 oncology nursing leaders and educators from 51 countries were represented at this conference. On September 8-9, Polly and Pam attended a pre-conference at ISNCC, sponsored by the Bristol/Myers/Squibb Foundation (BMSF) and presented the work that took place in Salzburg, Austria in April 2011 in providing ELNEC education to 33 nursing leaders from Czech Republic, Hungary, Poland, Romania, and Russia. Polly and Pam also provided a 1.5 hour workshop on international hospice and palliative care. Over 450 participants from across the globe attended this workshop. One-hundred ELNEC-International, Critical Care, Pediatric, and Geriatric CDs were distributed after the workshop.
ELNEC Trainer Receives Prestigious Award for Her Work in Caring for Children at the End of Life
Kathy Perko is a pediatric nurse practitioner and is the Director of the Bridges Palliative Care Program at the Oregon Health and Sciences University (OHSU) Doernbecher. Kathy was recently selected to receive a Sojourns Award from the Cambia Health Foundation, which recognizes leadership and innovation in the field of palliative and end-of-life care.  In 2001, Kathy and her team at OHSU Doernbecher started the first organized palliative care program in Oregon for children with cancer. As time passed, she worked to expand the program to support all children with life-limiting illnesses, and in 2005, the Bridges Palliative Care Program was born.  Kathy is now partnering with hospices around Oregon to help them better care for seriously ill children in their communities and is starting a pediatric palliative care telehealth program to continue caring for children after they leave the hospital. Congratulations on this wonderful award, Kathy!  
ELNEC Trainer Has Just Published Book
Dr. Vidette Todaro-Franceschi, professor at Hunter College of the City University of New York, is a nurse educator, researcher and consultant with a practice background in medical/surgical and critical care nursing.  Vidette coordinates and teaches palliative care and clinical leadership and has been an active ELNEC trainer since 2001. Compassion Fatigue and Burnout in Nursing:  Enhancing Professional Quality of Life is an extraordinary book about nursing and encourages the importance of nurses taking good care of themselves, so they can care for others in a healthy manner.   For more information and/or to order the book, go to www.qualitycaring.org
Additional Resources for ELNEC Trainers
City of Hope will be presenting the fourth and final training course, “Improving Quality of Life and Quality of Care for Oncology Family Caregiver,” for cancer healthcare professionals, July 10-12, 2013 in Anaheim, CA. The purpose of this National Cancer Institute-funded study is to improve support for oncology family caregivers across the physical, psychological, social, and spiritual domains. For further information, http://www.cityofhope.org/oncfamilycaregivers   
City of Hope will also present "Improving the Quality of Spiritual Care as a Dimension of Palliative Care" conference with generous support from Archstone Foundation on March 6 & 7, 2013. This will be a rare opportunity to network with others committed to improving the delivery of spiritual care in palliative care. For more information, click here.         
The Clinical Communication Collaborative is a resource center for teaching palliative care communication. Years of research have contributed to formal development of the COMFORT communication curriculum, an evidence-based, theoretically-grounded and tested curriculum that addresses the specific role of nurses (COMFORT-NURSE) and interprofessional care (COMFORT-IPE). The website houses all needed materials, including powerpoint lectures, course activities, and assessment forms. 
The Caregiver Insights Foundation is a website that offers information for caregivers caring for loved ones with Alzheimer’s and Dementia. The content on the site is provided by caregivers for caregivers in an effort to look at the world and to see it as the new “normal.” This is a wonderful site to share with families you are working with whose family member has dementia.  To view the site, go to http://caregiverinsights.com.
Remember, you should not be providing ELNEC courses with a CD older than 4 years old (2008 or older). If you have completed an ELNEC train-the-trainer course and need to purchase the 2012 ELNEC CD, contact Pam Malloy at pmalloy@aacn.nche.edu. If you do not plan to hold an ELNEC course until 2013, it is recommended that you wait and order the ELNEC 2013 CD, which will be available after February 1, 2013. There will be some substantial updates in 2013. ELNEC-Core, Pediatric Palliative Care and Critical Care are updated annually. Also, remember if you are planning an ELNEC training or train-the-trainer course, you must complete the notification form at http://www.aacn.nche.edu/elnec/planning-elnec-course and send it electronically to Pam.
Let Us Hear From You!
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)