Making Every Moment Count: The Palliative Care Child Life Specialist

Danielle Eaves Hernandez, CCLS, CTRS9/22/13

Danielle Eaves Hernandez•Graduated from University of Florida in 2004 with a Bachelors of Science in Therapeutic Recreation.• She is dually certified as CCLS, CTRS and completed her internship at St. Joseph Children’s Hospital in Marshfield, WI. •Danielle has been with Community PedsCare since October 2008. •She was published in the August 2010 issue of Children’s Project on Palliative/Hospice Services.• Co-Presented the “Hospice Child Life Specialist” for the Child Life Council in November 2011.•Presented at the Pediatrics Bioethics Conference at University of North Florida in November 2012.

Objectives

• Provide a brief overview of Hospice and Palliative Care philosophy and Services.

• Discuss strategies of becoming part of Palliative Care Team.

• Highlight memory making interventions appropriate for legacy work.

• Interact with memory making applications. • Collaborate and encourage participation from

attendees.

“We do all we can not only to help you to die peacefully, but also to live until you die”

~Dame Cecily Saunders~

Hospice and Palliative Care 101

• Hospice:Originally used to describe a place of shelter for weary and sick travelers returning from religious pilgrimages.

• Palliative:Palliative care “cloaks” a patient’s pain and symptoms and thereby brings comfort while improving their quality of life.

What Is Pediatric Palliative and/or

Hospice Care?“STANDARDS OF PRACTICE FOR PEDIATRIC

PALLIATIVE CARE AND HOSPICE “ an appendix to the existing NHPCO Standards of Practice for

Hospice Programs

a philosophy

an organized method for delivering competent, compassionate, and consistent care to children with chronic, complex and/or life-threatening conditions and their families.

This care focuses on

enhancing quality of life for the child and family,

preventing and/or minimizing suffering,

optimizing function,

providing opportunities for personal and spiritual growth.

Achieved through a combination of active & compassionate therapies

intended to comfort and supportthe childfamily membersother significant people in the

child’s life

This care is not meant to hasten death, nor to prolong suffering; instead, it aims to guide and assist the child and family in making the best decisions possible for whatever time they have remaining together.

Affirms life by supporting the child’s and family’s goals for the future including

hopes for curelife prolongationand/or improvement in quality of life

Becoming Part of the Palliative Care Team

National Consensus Project For Quality Palliative Care

“Guideline 1.3: An interdisciplinary team provides services to the patient and family consistent with the care plan…For pediatrics, this should include child life specialists.”

National Consensus Project for Quality Palliative Care. (2009). Clinical Practice Guidelines for Quality Palliative Care, Second Edition. Pittsburgh, PA: National Consensus Project.

• Advocate to be a player in palliative care• Meet with key players and supervisors on how to make

this a reality• Identify Child Life Champions• Educate interdisciplinary team on how Child Life

Specialists can provide assistance and utilize our unique skills

• Attend meetings with other key players and become part of Palliative Care Interdisciplinary Team

• Urge for early intervention in working with palliative patients

• Speak up!

Making Memories with Technology

Nick’s Movie

Iphone & Ipad Applications

•Camera•Imovie•Iphoto•FaceTime•Skype

Tell me a story

•Powerpoint•Story Creator•Scribble MyStory•Book Creator•Action Movie•MakeUp•Photo Books through Various Retailers

Say Cheese!

•Instagram•PicStich•Fdoodle•InstaCollage•PhotoEditor•FMM

Express Yourself!

•Swirlcity Lite•Miss Spider’s Tea Party•Glow Draw•Piano HD•Guitar Free•Monkey Drum•Crayola Paint & Create•Film a movie asking the patient about creating a CD of their favorite songs and why

Resources • NHPCO National Hospice and Palliative Care Organization

http://www.nhpco.org/i4a/pages/Index.cfm?pageID=3254• Centering Corporation http://www.centering.org/• Compassion Books http://www.compassionbooks.com/• Anti Coloring Books by Susan Stirker http://www.susanstriker.com/• Griefwatch http://www.griefwatch.com/• American Academy of Pediatrics. A policy statement on child life services. Pediatrics.

2006;18.1757-1761.• Armstrong-Dailey, A. & Zarbock, S. (Eds.). (2001) Hospice Care for Children. New York, NY. Oxford

University Press.• Bluebond-Langner, Myra (1980).The Private Worlds of Dying Children. Princeton, NJ: Princeton

University Press• Child Life Council And Co, comp. "Policy Statement: Child Life Services." American Academy of

Pediatrics 4th ser. 118 (2006): 1757-1763. 07 July-Aug. 2008 <http://aappolicy.aappublications.org/cgi/content/full/pediatrics;118/4/1757>.

• Children’s International Project on Palliative/Hospice Services (ChiPPS). (2001). A Call for Change: Recommendations to Improve the Care of Children Living with Life-Threatening Conditions. [White paper] Retrieved from http://www.nhpco.org/files/public/ChiPPSCallforChange.pdf

• Clark, Cynthia, Elizabeth Collins, and Cinda McDonald. "Home Care and Hospice Settings." Child Life Beyond the Hospital. Rockville, MD: Child LIfe Council, 2008. 111-128.

• Davies, B. (1999). Shadows in the sun: Experiences of sibling bereavement inchildhood. Philadelphia, PA: Brunner/Mazel.

• National Consensus Project for Quality Palliative Care. (2009). Clinical Practice Guidelines for Quality Palliative Care, Second Edition. Pittsburgh, PA: National Consensus Project.

• Sourkes, B. (1996). Armfuls of Time: The Psychological Experience of the Child with a Life-Threatening Illness. Pittsburgh, PA: Pittsburgh University Press.

Contact InformationDanielle Eaves HernandezDeaves@communityhospice.com(904) 407-6990

Community PedsCare website:http://communityhospice.com/Our-Services/Childrens-Services.aspx