E L N E C Pediatric Palliative Care End-of-Life Nursing Education Consortium Pediatric Palliative Care: Where have we been and where are we going? Betty Ferrell, PhD, FAAN, FPCN, CHPN Professor & Research Scientist City of Hope, Duarte CA E L N E C Pediatric Palliative Care
Child's Play E L N E C Pediatric Palliative Care
Death of Children n Annual Deaths per year in the US 53,000 - less than � 19 yrs (Martin et al., 2005) 800,000 � miscarriages 33,000 stillbirths � 19,000 neonatal � (Field & Behrman, 2003) E L N E C Pediatric Palliative Care
Serious, Chronic Medical Conditions of Children n Estimated that 1 M children in the US (10%) live with life- threatening illnesses n Significant gaps in access to health care and palliative care n Socially disadvantaged have higher mortality rates at younger age Field & Cassel, 1997; Hoyert et al., 2005; Yabroff et al., 2004 E L N E C Pediatric Palliative Care
History of Pediatric Palliative Care When Children Die, IOM report, 2003: “ Integrating effective palliative care from the time a child ’ s life- threatening medical problem is diagnosed will improve care for children who survive as well as children who die-and will help the families of all these children. ” E L N E C Pediatric Palliative Care
IOM Consensus Definition Palliative care seeks to Prevent or relieve the symptoms � produced by a life-threatening medical condition or its treatment Help patients with such conditions and � their families live as normally as possible Provide them with timely and accurate � information in decision making E L N E C Pediatric Palliative Care
Context & Challenges n More children are now surviving infancy Vaccines/NICU/prenatal � diagnoses/surgery n Patterns of child mortality differ 50% all deaths in infancy � 30% deaths from injury � n Unique issues: Not small adults � IOM Report, 2003 E L N E C Pediatric Palliative Care
Percentage of total childhood deaths by age group (1999) IOM, 2003 E L N E C Pediatric Palliative Care
ELNEC To provide a comprehensive national effort to improve end-of-life care by nurses www.aacn.nche.edu/ELNEC E L N E C Pediatric Palliative Care
City of Hope Previous Research* (1997-2000) n Curriculum Survey n Textbook Review n EOL Survey * All demonstrated need to improve end- of-life nursing care E L N E C Pediatric Palliative Care
Summary of Texts N=50 N % Total Pages 45,683 100% # Pages Related to EOL 902 2% # Chapters 1,750 100% # Chapters Related to EOL 24 1.4% Ferrell et al, ONF 26(5), 1999 E L N E C Pediatric Palliative Care
Review of Pediatric Texts Texts Reviewed N = 3 Pediatric Nursing: Caring for Children (Ball & Bindler) Essentials of Pediatric Nursing (Whaley & Wong) Thompson ’ s Pediatric Nursing (Schulte) E L N E C Pediatric Palliative Care
Pediatric Review Total Pages = 2599 Pages r/t EOL = 33.5 or 1.3% Total Chapters = 70 Chapters r/t EOL = 2 of 2.8% * All 3 texts later were award winners E L N E C Pediatric Palliative Care
Partners in Care E L N E C Pediatric Palliative Care
Background of ELNEC Pediatric Palliative Care n Pediatrics included in ELNEC Core since inception n September 11, 2001 decision to create ELNEC - PPC E L N E C Pediatric Palliative Care
Background (cont.) n Draft curriculum created 10/01-6/02 n Pilot course held in North Carolina 6/02 E L N E C Pediatric Palliative Care
Background (cont.) n Revision of syllabus with consultants 7/02 – 7/03 n First national trainers conference – August 2003 E L N E C Pediatric Palliative Care
E L N E C Pediatric Palliative Care
Course n 1000+ page syllabus n 3-Day Train-the-Trainer n Multiple teaching methods: Videos � Roundtables � Didactic � Non-drug labs � Role play � E L N E C Pediatric Palliative Care
E L N E C Pediatric Palliative Care
E L N E C Pediatric Palliative Care
E L N E C Pediatric Palliative Care
ELNEC Pediatric Palliative Care Modules Module 1 Nursing Care in Pediatric Palliative Care Module 2 Special Considerations in Pediatric Palliative Care Module 3 Communication Module 4 Ethical/Legal Issues Module 5 Cultural Considerations E L N E C Pediatric Palliative Care
ELNEC Pediatric Palliative Care Modules (cont.) Module 6 Pain Management Module 7 Symptom Management Module 8 Care at the Time of Death Module 9 Loss, Grief, and Bereavement Module 10 Models of Excellence in Pediatric Palliative Care E L N E C Pediatric Palliative Care
A Brief Life E L N E C Pediatric Palliative Care
ELNEC Pediatric Palliative Care Evaluation Data (10 courses) n 1680 Participants n Representing all 50 states and other international countries (i.e. Canada, Philippines and Nigeria) E L N E C Pediatric Palliative Care
ELNEC Pediatric Palliative Care Evaluation Data Barriers Identified in Teaching Pediatric Palliative Care: n Fears associated with dying n Cultural beliefs n Lack of educational resources n Lack of staff time n Difficulties in determining prognosis of children E L N E C Pediatric Palliative Care
The Hands of a Nurse E L N E C Pediatric Palliative Care
Disseminating and Implementing ELNEC-PPC E L N E C Pediatric Palliative Care
JANET DELL Hospice of the Good Shepherd Chambersburg, PA n Organizes and provides an annual children ’ s bereavement camp n Uses ELNEC-PPC curriculum to train camp counselors n Speaks at local schools about children and grief E L N E C Pediatric Palliative Care
KATHY LYNN HO UCSF Children ’ s Hospital San Francisco, CA n Promotes monthly pc rounds with interdisciplinary team n Developed pain, anxiety, dyspnea, and terminal agitation algorithms n Finalized standardized pediatric pc orders n Completed a pc educational binder for the nursing unit E L N E C Pediatric Palliative Care
AYDA NAMBAYAN St. Jude Children ’ s Research Hospital Memphis, TN n Developed a web-based version of ELNEC-PPC (www.cure4kids.org) n Over-seeing the online version of ELNEC-PPC as it is being translated in Portuguese and Spanish n Now implementing ELNEC widely in the Philippines E L N E C Pediatric Palliative Care
MARGY MAYFIELD Coastal Kids Home Care Watsonville, CA n Co-founder of the only non-profit licensed home health agency for children with life- threatening and/or terminal illness in the state of CA n Covers 4 counties and 7 area hospitals E L N E C Pediatric Palliative Care
MARGIE RANDOPH Sutter Memorial Hospital Children ’ s Center Sacramento, CA n Trains new nurses in orientation about pediatric pc n Holds staff bereavement and coping classes for all pediatric staff E L N E C Pediatric Palliative Care
GREG BURNS The Jason Program Saco, ME n Uses ELNEC-PPC to train home healthcare providers n Collaborated with ELNEC-Core trainers to hold a joint ELNEC- Core and ELNEC-PPC course E L N E C Pediatric Palliative Care
Nathania Bush & Teresa Howell Morehead State University, KY n Camp SMILE Partnership with � St. Claire Hospice Camp for children ages � 5-17 experiencing loss Nursing students � trained in grief, growth development, etc 2 credit elective course � Camp held in July 08 � and 09 with over 100 children attending E L N E C Pediatric Palliative Care
Melanie Steilen Pediatric PC Consultant, New York, NY n Providing training to 2 interdisciplinary groups at the Brooklyn Visiting Nurses Services of NY n In the process of forming a pediatric palliative care division for homecare E L N E C Pediatric Palliative Care
Julie Faught Children ’ s Hospital Birmingham, AL n First 8 months of beginning pc consult service, 96 children were served n PALS – 96 nurses trained in palliative care Referrals ↑ 30% � Daily rounds � Palliative Care, Children ’ s Hospital Birmingham, AL E L N E C Pediatric Palliative Care
Margaret Farrar-Laco Akron Children ’ s Hospital, OH n Educates new graduate nurses n Develops relationships and educates in long-term care, homecare, and hospice agencies regarding pediatric palliative care E L N E C Pediatric Palliative Care
Mary Spicketts Hospice of Michigan, Ada, MI n Goal: Support through n Provides perinatal months leading up to delivery services to families giving birth to a child with life- Support All decisions � threatening anomalies made by family Keep baby comfortable Supports parents, � � siblings, grandparents Minimize invasive tests, � Works with genetic Allow family control � � counselor (holding baby as long as Accompanies family to they wish, taking baby � Dr ’ s appointments to home, etc) receive “ bad news ” Provide bereavement � services E L N E C Pediatric Palliative Care
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