www.epec.net

The EPEC project, based at Northwestern University in Chicago, has been an innovative leader in palliative care education throughout North America since 1999. Over the past 7 years, EPEC has been successful in training 1,800 health care professional “trainers” in adult palliative care. These trainers have returned to their local communities to educate over 1,000,000 clinicians and care-givers. Now, in conjunction with the Dr. Jay Foundation, a newly established pediatric palliative care program will extend training to address the special requirements of terminally ill children and their families. Health care professionals, caregivers, volunteers and families will become educated and awareness of the need for pediatric palliative care programs will be increased.

According to a landmark report from the Institute of Medicine, the goal for children and families facing life-threatening disease should be to create a healthcare system “that people can trust to provide competent, consistent, and compassionate care and that families can count on for support and solace as they experience a loved one’s grave illness or death.”¹ Coping with experiences at the end of life are even more difficult when the patient is a child or young person.

Palliative care is designed to enhance choice, relieve suffering, and ensure the best quality of care during living, dying and grieving. Until recently, palliative care had focused predominantly on the needs of adults who are dying, and the needs of children have been overlooked.

Children with life threatening and often long-term illnesses and their families have the right to receive palliative and end of life care that is planned, coordinated and delivered by health care professionals who understand how to enhance a child’s quality of life.
Appropriate education for clinicians of all disciplines who work with these children is a first step, but not the only step. Education for clinicians must also be coupled with education for, empowerment of and support for their families. After building education for clinicians, our next step will be to develop an education program that will have a curriculum that will address the support needs of parents and family. We will train health care professionals who can counsel parents and family.

This is a joint project between the Dr. Jay Charitable Foundation, the Education for Palliative and End of Life Care (EPEC™) Project at Northwestern University in Chicago and the Temmy Latner Centre for Palliative Care in Toronto Canada.

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