Education is key to changing and improving practice: the End-of-Life Nursing Education Consortium

The need for palliative care nursing education

The world is diverse and is made up of multiple cultures, traditions, religions, and rituals. Yet, while there are many differences among nations, there is one commonality, no matter where one lives, their race, age, or creed – everyone dies.  

In many cultures, people deny this fact as they believe medical science can cure any ailment. 

Many healthcare providers feel that death means they failed, rather than viewing death as a natural aspect of life. 

How do nurses and other healthcare providers respond to patients demanding further futile treatment, irrespective of continued suffering and loss of finances? 

What prevents healthcare providers from recognizing the important role of hospice and palliative care? 

While there are many responses to this question, let’s start with the fact that people can not practice what they do not know. 

Developing ELNEC

In 2000, nursing researchers, faculty and practitioners in the United States began to develop a curriculum: End-of-Life Nursing Education Consortium (ELNEC) for nurses caring for the seriously ill.

Patients were suffering and did not feel they had control in making their own healthcare decisions. 

Nurses witnessed this as they talked with distraught patients with poor pain and symptom management and their families. 

ELNEC provides education and resources for nurses to educate their colleagues and to deliver compassionate and evidence based care to those with serious illness. 

ELNEC is a partnership between the American Association of Colleges of Nursing (AACN) and the City of Hope Medical Center. 

This partnership is unique, as it has tremendous support from both academia and practice. 

The original ELNEC curriculum, ELNEC-Core, was developed in 2000 and the first train-the-trainer course was held in Pasadena, California (USA) in January, 2001. 

Almost 20,000 people trained

Since its inception, over 19,500 nurses and other healthcare professionals have attended one of 156 national and international ELNEC train-the-trainer courses. 

Trainers have come from all 50 US states, the District of Columbia and 85 countries worldwide. 

At these courses, nurses are equipped with PowerPoint slides, case studies, videos and supplemental teaching materials to assist them in taking the education back to their institution.

The curriculum has been translated into eight languages (Spanish, Russian, German, Korean, Japanese, Chinese, Romanian and Armenian). 

In 2014, 254 regional and international courses were held in 39 states, the District of Columbia and 10 international countries (Austria, Canada, Ethiopia, Germany, Japan, Philippines, Singapore, Taiwan, Turkey and Vietnam) by those who have attended an ELNEC train-the-trainer course. 

It is estimated that over 7,600 people received ELNEC training by ELNEC trainers in 2014 alone. 

Developing new curricula

Over the past 15 years, different ELNEC curricula have been developed to increase knowledge and improve practice in specialty areas.

Examples of current ELNEC curricula used today include:   

• ELNEC-Core: Those working in medical-surgical areas, homecare, hospice and for faculty and students in schools of nursing.
• ELNEC-Pediatric Palliative Care: Those providing care to parents experiencing perinatal death, for neonates, young children or adolescents in a variety of clinical settings, as well as homecare. 
• ELNEC-Critical Care: Those working in intensive care units, emergency departments, burn units, dialysis centers and other critical care settings.
• ELNEC-Geriatric: Those working with older adults in acute care settings, long-term care and skilled nursing facilities or patients’ homes.
• ELNEC-APRN: For advanced practice nurses who work in any setting, with an emphasis on pain and symptom management, communication, billing issues etc.
• ELNEC-International: Developed specifically for use in countries other than the US.

Key themes

Each of these ELNEC curricula has the same general themes:

• The family is the unit of care
• No other healthcare professional spends more time with the patient than the nurse and because of this, the nurse plays a vital role in advocating for the patient/family
• It is important to assess, respect and adhere to the patient’s culture
• Attention to special populations (eg: the very young, the very old, those with mental and physical disabilities, prisoners, the poor and homeless)
• End of life issues impact all systems of care
• Financial issues influence end of life/palliative care
• Palliative care should be extended to all patients with serious illness – not just those with cancer or HIV/AIDS
• Interdisciplinary care is essential.

International work

While ELNEC’s primary aim was to educate nurses to improve palliative care, initial efforts were focused in the United States. 

However, in the early years of ELNEC, trainers would report that they had occasions to teach ELNEC while visiting other countries. 

The response was always positive and participants were grateful for the education. 

Many ELNEC trainers have had opportunities to consult with educators, health administrators, Ministers of Health and community leaders to improve care of the dying in their countries. 

It is estimated that over 5,800 nurses and other healthcare providers have received ELNEC training internationally. 

Great strides have been made to promote palliative care throughout the world by various international ELNEC trainers. Examples include: 

• Sayaka Takenouchi, PhD, RN and her team translated ELNEC-Core, Geriatric, and Critical Care into Japanese
• Hyun Sook-Kim, PhD, RN and her team translated ELNEC-Core and Geriatric into Korean
• Nicoleta Mitrea, PhD, APRN, Daniela Mosiou, MD, PhD and other leaders at Casa Sperantei in Brasov, Romania, are working to further develop and sustain a Center of Excellence in Palliative Nursing in Eastern Europe
• Zipporah Ali, MD and her colleagues are working to promote ELNEC in every school of nursing across Kenya
• Bea Werner, RN and Silkie Walter, RN translated ELNEC-Core into German
• John Lunn, RN, M-Div provides ELNEC education in schools of nursing and for practicing nurses in India, Malaysia, and Liberia
• Lily Niang-Huei Peng, PhD, RN, from Taiwan, translated ELNEC-Pediatric Palliative Care into Taiwanese
• Yuhan Lu, RN and colleagues from China translated ELNEC-Core into Chinese
• Ingrid Porter, APRN is promoting ELNEC courses in Saudi Arabia.

What’s next for ELNEC? 

In 2015, 11 ELNEC train-the-trainer courses will be held across the US. In addition, four international courses will be presented in Albania, Austria, China and Kenya. 

For more information about the ELNEC project, go to www.aacn.nche.edu/ELNEC or contact Pam Malloy at pmalloy@aacn.nche.edu 

This article was written by Pam Malloy, MN, RN, FPCN, Director and Co-Investigator of the ELNEC Project, American Association of Colleges of Nursing, Washington, DC. Note: Betty Ferrell, PhD, MA, CHPN, FPCN, FAAN is the Principal Investigator of the ELNEC Project, City of Hope Medical Center, Duarte, CA.