Child Life and Pediatric Palliative Care

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. Palliative Care • 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

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. Things to remember • 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.)

13. A patient’s perspective

14. A Family centered bereavement camp for children 5-18 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 • www.boscampmacon.org

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. 2010. Web. 16 Aug. 2012. Morrow, Angela. "Section on Hospice and Palliative Medicine.” American Academy of Pediatrics. N.p., n.d. Web. 16 Aug. 2012. <http://www2.aap.org/sections/palliative/WhatIsPalliativeCare.html>. "Palliative Care." Palliative Care. N.p., n.d. Web. 16 Aug. 2012. <http://www.getpalliativecare.org/>.

16. Contact Information The Children’s Hospital @ MCCG Child Life Department 777 Hemlock St. MCS# 38 Macon, GA 31201 Abby Davidson Amanda Dougherty Davidson.abby@mccg.org Dougherty.amanda@mccg.org (478) 633-1276 (478) 633-6384 Justine Jordan Megan McGraw Jordan.justine@mccg.org Schoch.megan@mccg.org (478) 633-6734 (478) 633-6736 Kristin Saari Saari.kristin@mccg.org (478) 633-6539