1. Child Life and Pediatric Palliative Care
The Children’s Hospital
Macon, GA
Abby Davidson, CCLS
Megan McGraw, CCLS
Kristin Saari, CCLS, CTRS
Justine Jordan, CCLS
Amanda Dougherty, CCLS

2. Any form of medical care or treatment that focuses on reducing the severity of a disease or illness
Palliative care is designed to meet the unique and special needs of children living with life-threatening conditions
Focuses on the needs of the patient and family to enhance the quality of life, pain and symptom management, psychosocial and spiritual support, and coordination of care (American Academy of Pediatrics, Angela Morrow, RN)
Gives the family a better understanding of their treatment options in order to gain control of their child’s care
Palliative Care

3. Palliative Care is about…
Patient
Help provide understanding, comfort, and better quality of life
Family
Palliative Care’s goal is to support the whole family during a stressful and difficult time.
Living
Allowing the patient to live the best life possible with family and friends.
Friends, Community
There to support caregivers, friends, and those in the patient’s community when needed.
Empowerment
Empowering the patient and family to participate in child’s care,
thereby giving hope and the tools to find comfort and control in a stressful situation

4. Palliative Care is not just about...
End of Life
Palliative Care should be introduced after diagnosis of a potentially life threatening disease
and not just when a cure
is no longer an option.
Hospice
Patients are only eligible for
Hospice once they have
reached a prognosis of
6 months or less. …

5. A nurse’s perspective

6. Help, Understanding, Guidance and Support
HUGS is the Children’s Hospital Palliative Care, Pain and Symptom Management and Transitions Care Program, it provides care across the continuum while providing assistance with the management of the physical, psychological, emotional, and spiritual needs of infants and children and their families when conditions which are chronic, debilitating and/or life limiting exist.

7. Program Goals
To provide help, understanding, guidance and support for patients and families dealing with treatment options, care decisions and end of life decisions.
To promote the highest quality of life for the patient and family.
To improve the quality of the child’s remaining life and help death be a gentle and peaceful process.
To provide symptom control and pain management.
Make recommendations and assist families in making life choice decisions.
To educate the patient and family to promote understanding of the underlying disease process.
To coordinate multidisciplinary services.
Mission: To promote and enhance the quality of life for infants and children no matter how short their life.

8. Hugs Team MD Leaders Nurse Social Worker Transitions Counselor Chaplin
Child Life
Pain management
Home/Health Hospice
Administration

9. Child Life and Palliative Care
Support
Education
Resources
Photography, recording memories, and special keepsakes
Skyler Bear Program
Legacy Building

10. Support Provide support for siblings
Provide opportunities for family activities (sporting events, holiday celebrations, etc.)
Provide opportunities for memory making
Provide normalization to environment
Advocate for patient’s/families needs
Wings of Hope
Building a trusting relationship and providing open lines of communication
Non-Pharmacological pain management

11. Education
Provide understanding through preparation and support during medical procedures
Participation in health care and decision making
Diagnostic Teaching
Sibling education
Education to staff regarding patient development, coping mechanisms, and understanding of medical status
Educate Parents on using developmentally appropriate language

12. Use honest, clear, and concise language to engage patient in process
Not all legacy building is the work of adults
Address concerns and fears that the child or teen may have, but not able to express them
Cultural and Religious beliefs should be respected and incorporated.
Encourage Families to avoid euphemisms, “Went to Sleep”, and “Went to Heaven”
Remind parents that children cope through play
Siblings need to be provided activities during and between each visit (handprint canvas, bracelets, etc.)
Things to remember

13. A patient’s perspective

14. A Family centered bereavement camp for children years of age and their parents or guardian who have experienced the death of a family member or significant person in their lives.
Free of Charge
Three-day camp

15. "Memory Making and Legacy Building in Pediatric Palliative and Hospice Care.“ NHPCO.org. Ed. Charles A. Corr, PhD, Christy Torkildson, RN, PHN, MSN, and Maureen Horgan, LICSW. N.p., Aug Web. 16 Aug
Morrow, Angela. "Section on Hospice and Palliative Medicine.” American Academy of Pediatrics. N.p., n.d. Web. 16 Aug <
"Palliative Care." Palliative Care. N.p., n.d. Web. 16 Aug
<

16. The Children’s Hospital @ MCCG
Contact Information
The Children’s MCCG
Child Life Department
777 Hemlock St.
MCS# 38
Macon, GA 31201
Abby Davidson Amanda Dougherty
(478) (478)
Justine Jordan Megan McGraw
(478) (478)
Kristin Saari
(478)