E L N E C Pediatric Palliative Care End-of-Life Nursing - - PowerPoint PPT Presentation

Pediatric Palliative Care: Where have we been and where are we going?

C E N L E

End-of-Life Nursing Education Consortium

Pediatric Palliative Care

C E N L E Pediatric Palliative Care

Betty Ferrell, PhD, FAAN, FPCN, CHPN Professor & Research Scientist City of Hope, Duarte CA

C E N L E Pediatric Palliative Care

Child's Play

C E N L E 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)

C E N L E 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

C E N L E 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.”

C E N L E 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

C E N L E 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

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

C E N L E Pediatric Palliative Care

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

ELNEC

C E N L E Pediatric Palliative Care

n Curriculum Survey n Textbook Review n EOL Survey

City of Hope Previous Research*

(1997-2000)

*All demonstrated need to improve end-

• f-life nursing care

C E N L E 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

C E N L E 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)

C E N L E 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

C E N L E Pediatric Palliative Care

Partners in Care

C E N L E 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

C E N L E Pediatric Palliative Care

Background (cont.)

n Draft curriculum created

10/01-6/02

n Pilot course held in North

Carolina 6/02

C E N L E Pediatric Palliative Care

n Revision of syllabus with

consultants 7/02 – 7/03

n First national trainers

conference – August 2003

Background (cont.)

C E N L E Pediatric Palliative Care

C E N L E 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

C E N L E Pediatric Palliative Care

C E N L E Pediatric Palliative Care

C E N L E Pediatric Palliative Care

C E N L E 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

C E N L E 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

C E N L E Pediatric Palliative Care

A Brief Life

C E N L E Pediatric Palliative Care

ELNEC Pediatric Palliative Care Evaluation Data (10 courses)

n 1680 Participants n Representing all 50 states and

• ther international countries (i.e.

Canada, Philippines and Nigeria)

C E N L E 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

• f children

C E N L E Pediatric Palliative Care

The Hands of a Nurse

C E N L E Pediatric Palliative Care

Disseminating and Implementing ELNEC-PPC

C E N L E Pediatric Palliative Care

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

JANET DELL

Hospice of the Good Shepherd Chambersburg, PA

C E N L E 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

C E N L E 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

C E N L E 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

C E N L E Pediatric Palliative Care

MARGIE RANDOPH

Sutter Memorial Hospital Children’s Center Sacramento, CA

n Trains new nurses in

• rientation about

pediatric pc

n Holds staff

bereavement and coping classes for all pediatric staff

C E N L E 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

C E N L E 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

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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

C E N L E 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

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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

C E N L E Pediatric Palliative Care

Mary Spicketts Hospice of Michigan, Ada, MI

n Provides perinatal

services to families giving birth to a child with life- threatening anomalies

• Supports parents,

siblings, grandparents

• Works with genetic

counselor

• Accompanies family to

Dr’s appointments to receive “bad news”

n 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

C E N L E Pediatric Palliative Care

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

n Little Stars: Enables

infants/children with life-limiting illness to receive care at home

n Courageous Kids:

Support group for youth ages 6-18

• Area schools
• Residential summer

camp

C E N L E Pediatric Palliative Care

APON: An Organization Committed to EOL/PC Education

n Through the leadership of APON

• approx. 20 faculty have been

assembled to provide ELNEC- PPC training

n Six courses held across the US n Total trained = 456 from 30

states, Canada, Sao Paulo, Australia, Japan

n Emphasis on interdisciplinary

C E N L E Pediatric Palliative Care

Lori Butterworth and Devon Dabbs

Children’s Hospice and Palliative Care Coalition Watsonville, CA

n Co-Founders Directors n Advocates n Spokespersons n Have successfully

supported legislation enabling children and their families access to concurrent care (curative and palliative care)

C E N L E Pediatric Palliative Care

Emergency Room in CA: Taking Children to the Morgue

n 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

C E N L E Pediatric Palliative Care

Emergency Room in CA: Taking Children to the Morgue

(Cont.)

n Post-ELNEC

• 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

C E N L E Pediatric Palliative Care

The ELNEC Website:

www.aacn.nche.edu/ELNEC

n 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

C E N L E Pediatric Palliative Care

C E N L E Pediatric Palliative Care

Future Directions for ELNEC Pediatric Palliative Care ELNEC – PPC

www.aacn.nche.edu/ELNEC

C E N L E Pediatric Palliative Care

Life in the ICU