Pediatric Palliative Care

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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

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Child's Play E

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Death of Children n 

Annual Deaths per year in the US "

53,000 - less than 19 yrs (Martin et al., 2005)

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800,000 miscarriages 33,000 stillbirths 19,000 neonatal (Field & Behrman, 2003)

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Serious, Chronic Medical Conditions of Children n 

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Estimated that 1 M children in the US (10%) live with lifethreatening illnesses Significant gaps in access to health care and palliative care Socially disadvantaged have higher mortality rates at younger age

Field & Cassel, 1997; Hoyert et al., 2005; Yabroff et al., 2004 E

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History of Pediatric Palliative Care When Children Die, IOM report, 2003: Integrating effective palliative care from the time a child s lifethreatening 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

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IOM Consensus Definition Palliative care seeks to "

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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 N

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Context & Challenges n 

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More children are now surviving infancy " Vaccines/NICU/prenatal diagnoses/surgery Patterns of child mortality differ " 50% all deaths in infancy " 30% deaths from injury Unique issues: " Not small adults IOM Report, 2003

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Percentage of total childhood deaths by age group (1999) IOM, 2003

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ELNEC

To provide a comprehensive national effort to improve end-of-life care by nurses www.aacn.nche.edu/ELNEC

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City of Hope Previous Research* (1997-2000)

Curriculum Survey n  Textbook Review n  EOL Survey n 

*All demonstrated need to improve endof-life nursing care E

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Summary of Texts N=50 Total Pages # Pages Related to EOL # Chapters # Chapters Related to EOL

N 45,683

% 100%

902 1,750

2% 100%

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1.4%

Ferrell et al, ONF 26(5), 1999

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Review of Pediatric Texts Texts Reviewed

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Pediatric Nursing: Caring for Children (Ball & Bindler)

Essentials of Pediatric Nursing (Whaley & Wong)

Thompson s Pediatric Nursing (Schulte) E

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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

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Partners in Care E

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Background of ELNEC Pediatric Palliative Care n 

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Pediatrics included in ELNEC Core since inception September 11, 2001 decision to create ELNEC - PPC N

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Background (cont.) n 

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Draft curriculum created 10/01-6/02 Pilot course held in North Carolina 6/02 N

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Background (cont.) n 

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Revision of syllabus with consultants 7/02 – 7/03 First national trainers conference – August 2003 N

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Course 1000+ page syllabus n  3-Day Train-the-Trainer n  Multiple teaching methods: n 

Videos Roundtables Didactic Non-drug labs Role play

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ELNEC Pediatric Palliative Care Modules Module 1

Nursing Care in Pediatric Palliative Care Special Considerations in Pediatric Palliative Care Communication Ethical/Legal Issues Cultural Considerations

Module 2 Module 3 Module 4 Module 5 E

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ELNEC Pediatric Palliative Care Modules (cont.) Module 6 Module 7 Module 8 Module 9 Module 10 E

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Pain Management Symptom Management Care at the Time of Death Loss, Grief, and Bereavement Models of Excellence in Pediatric Palliative Pediatric Palliative Care

A Brief Life E

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ELNEC Pediatric Palliative Care Evaluation Data (10 courses)

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1680 Participants Representing all 50 states and other international countries (i.e. Canada, Philippines and Nigeria) N

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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

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The Hands of a Nurse E

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Disseminating and Implementing ELNEC-PPC

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JANET DELL Hospice of the Good Shepherd Chambersburg, PA n 

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Organizes and provides an annual children s bereavement camp Uses ELNEC-PPC curriculum to train camp counselors Speaks at local schools about children and grief L

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KATHY LYNN HO UCSF Children s Hospital San Francisco, CA n 

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Promotes monthly pc rounds with interdisciplinary team Developed pain, anxiety, dyspnea, and terminal agitation algorithms Finalized standardized pediatric pc orders Completed a pc educational binder for the nursing unit


AYDA NAMBAYAN St. Jude Children s Research Hospital Memphis, TN n 

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Developed a web-based version of ELNEC-PPC (www.cure4kids.org) Over-seeing the online version of ELNEC-PPC as it is being translated in Portuguese and Spanish Now implementing ELNEC widely in the Philippines L

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MARGY MAYFIELD Coastal Kids Home Care Watsonville, CA n 

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Co-founder of the only non-profit licensed home health agency for children with lifethreatening and/or terminal illness in the state of CA Covers 4 counties and 7 area hospitals


MARGIE RANDOPH Sutter Memorial Hospital Children s Center Sacramento, CA n 

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Trains new nurses in orientation about pediatric pc Holds staff bereavement and coping classes for all pediatric staff


GREG BURNS The Jason Program Saco, ME n 

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Uses ELNEC-PPC to train home healthcare providers Collaborated with ELNEC-Core trainers to hold a joint ELNECCore and ELNEC-PPC course L

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Nathania Bush & Teresa Howell Morehead State University, KY n 

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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


Melanie Steilen Pediatric PC Consultant, New York, NY n 

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Providing training to 2 interdisciplinary groups at the Brooklyn Visiting Nurses Services of NY In the process of forming a pediatric palliative care division for homecare


Julie Faught Children s Hospital Birmingham, AL n 

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First 8 months of beginning pc consult service, 96 children were served PALS – 96 nurses trained in palliative care " Referrals ↑ 30% " Daily rounds N

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Palliative Care, Children s Hospital Birmingham, AL Pediatric Palliative Care

Margaret Farrar-Laco Akron Children s Hospital, OH n 

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Educates new graduate nurses Develops relationships and educates in long-term care, homecare, and hospice agencies regarding pediatric palliative care L

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Mary Spicketts Hospice of Michigan, Ada, MI Goal: Support through months leading up to delivery " Support All decisions made by family " Keep baby comfortable " Minimize invasive tests, " Allow family control (holding baby as long as they wish, taking baby home, etc) " Provide bereavement services Pediatric Palliative Care

Provides perinatal services to families giving birth to a child with lifethreatening anomalies " Supports parents, siblings, grandparents " Works with genetic counselor " Accompanies family to Dr s appointments to receive bad news

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Nancy Diane Manelli-Brewer Hospice of Sacred Heart, Eugene, OR n 

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Little Stars: Enables infants/children with life-limiting illness to receive care at home Courageous Kids: Support group for youth ages 6-18 " Area schools " Residential summer camp

APON: An Organization Committed to EOL/PC Education n 

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Through the leadership of APON approx. 20 faculty have been assembled to provide ELNECPPC training Six courses held across the US Total trained = 456 from 30 states, Canada, Sao Paulo, Australia, Japan Emphasis on interdisciplinary L

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Lori Butterworth and Devon Dabbs Children s Hospice and Palliative Care Coalition Watsonville, CA n  n  n  n 

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Co-Founders Directors Advocates Spokespersons Have successfully supported legislation enabling children and their families access to concurrent care (curative and palliative care)


Emergency Room in CA: Taking Children to the Morgue n 

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Pre-ELNEC " Unable to reach parents immediately, child was taken from the ED to the morgue " Family members were escorted to the morgue by security guard


Emergency Room in CA: Taking Children to the Morgue (Cont.) n 

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Holding room was designated in the ER Room was painted Staff trained to be with these families as they viewed their child Follow-up care provided to family N

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The ELNEC Website: www.aacn.nche.edu/ELNEC Provides trainer s names by state n  Lists future trainings n  Resources n  Publications n  The ELNEC Connections n  Award winners n  Up-dates n  Much more n 

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ELNEC – PPC www.aacn.nche.edu/ELNEC

Future Directions for ELNEC Pediatric Palliative Care

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Life in the ICU E

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