1. CREATING A LEGACY OF LOVE: LEGACY BUILDING AND COMMUNICATION WITH CHILDREN Nicolle Eighmy Alyssa DeMoss

2. WHAT IS A LEGACY Legacies are the impact people have on the world and the people around them that they create as they live and leave behind  Intangible: who they are, what they love, their passions and interests, goals and values  Tangible: records of their life, written stories, messages to loved ones, pictures, and gifts Everyone has their own legacy, and they decide what it is and how they want to share it

3. LEGACY OF LOVE PROGRAM Established in December 2007 by Breanna Hopkins Murray, CCLS, a Certified Child Life Specialist at the Texas Children’s Cancer and Hematology Centers Designed to encourage legacy building for patients who have a poor prognosis, are nearing their end-of- life or are no longing pursuing curative treatment Once in the program, each family will have scheduled visits with their child life specialist while inpatient, during clinic visits, or in their homes The visits continue until the patient is no longer able to participate. The family is evaluated again and another curriculum may be created for the siblings if appropriate As appropriate, siblings can remain on the program once a month for six months and then every other month for six months following the death of their brother or sister

4. WHO WILL BE INVOLVED IN LEGACY OF LOVE? Must be part of the Cancer Center service Patient is identified by the palliative care team Patient must be 5 years or older Patient and family must be open and eager to engage in legacy building Patient and family must be willing to schedule visits with their child life specialist in the hospital on a regular basis. If patient is unable or unwilling to come to the hospital, home visits can be arranged if within a reasonable distance from the hospital

5. CONTINUITY OF CARE As a patient’s child life specialist we have built rapport at diagnosis and provided a therapeutic presence throughout treatment Families often report feeling comfort from seeing a familiar face during the challenge of transitioning to end of life care Legacy of Love services extend beyond a patient’s death to offer bereavement support to siblings

6. EXPRESSIVE ACTIVITIES Facilitate developmentally appropriate expressive activities to allow patients a safe place to explore and share feelings  Mask activity  Sand/bead emotions  Past, present, future activities  Wish box  “Top ten things I want to do in my life”  Body collage  “My Wishes”  “Voicing My Choices”  Feelings assessment tool

7. THE IMPORTANCE OF EDUCATION ON DEATH AND DYING It is common for the child’s family and medical staff to attempt to protect the child by withholding information and not be open and honest with their children regarding their prognosis and decision making at end of life However, being open and honest with children:  Allows the child to feel more comfortable and be more aware of upcoming physical and mental changes  Empowers the child to be more trusting of their medical team  Gives the child opportunity to express themselves and voice their wishes  Provides an opportunity for intentional legacy building  Opens the doors for communication which allows children to feel safe and comfortable when expressing themselves It is important for siblings to also be involved to promote effect coping before and after the death to help avoid feelings of mistrust and resentment

8. LEGACY BUILDING PROJECTS Letters to family Poetry, book, song writing Art projects Handprint family tree Audio/video recordings Living wills Garden stones Photography/scrapbooking Memory molds

9. INFANTS AND TODDLERS  Up to 6 months: No understanding of death  From 6 months to 1 year: Death is experienced similar to separation, with a sense of “something different”  From 1 year to 2 years: Death has no meaning attached to it, but they experience sadness because of the loss. They are mostly impacted by the grief reactions of their family members  Erikson’s Trust vs Mistrust: A change in routine or regular caregiver can cause distress  Education can be directed towards caregivers to provide routine to promote trust and help create simple phrases to support communication  Legacy-building can be aimed towards providing memory-items for future benefit

10. PRESCHOOL  Death is understood as temporary and reversible  Misunderstand that death can be “fixed,” the person can be awakened, or is gone and will return  Magical thinking can lead to misunderstanding of cause of death and potential guilt  Erikson’s Initiative vs Guilt: Can feel guilt for death based on what they did or did not do  Communication should involve honest and concrete words, such as “died” with simple reason  Educate that deceased cannot feel pain, won’t be hungry or cold anymore  For dying child, focus should be on physical comfort and family support/not being alone  Legacy-building allows for opportunity for them to help share ideas or do something positive to help or redirect

11. SCHOOL-AGED  Understanding of death is developing more clearly, as permanent, irreversible and universal  There is an increased interest in the physical and biological aspects of death, and what happens after death  May display tendencies towards denial, and demonstrate stronger emotions such as anger  Increased awareness of future personal death may cause fear  Erikson’s Industry vs. Inferiority: A change in prognosis can lead to a feeling of helplessness and disorientation  Communication should be concrete and honest, with clear explanation of death and cause, and open a discussion of afterlife beliefs  Focus on death being end of suffering, physically and emotionally, for deceased  Legacy building provides alternate goals and “jobs” with value

12. PRETEEN AND TEENAGER  Death is understood at an adult level  Typically already involved in conversations and decisions  Increase in abstract thinking leads to questions such as, “why me?” and “what is the meaning of life?”  Demonstrate strong emotions  Erikson’s Identity vs. Role Confusion: Can often feel labeled or defined by their diagnosis and later by their prognosis  Communication should be honest and respectful of their wishes  Provide opportunity for discussing abstract ideas  Legacy building provides an opportunity for teens to create their own identity and share it with others

13. THE VALUE OF LEGACY BUILDING  Patient’s often report feeling sad, angry, hopeless, empty, scared and lonely as they near end of life  Legacy building can provide an alternate focus, it is a fun activity to both occupy their time and promote positive coping  It is an avenue for families to spend time together and create open discussions  Provides families with the resources to create lasting memories

14. HELPING A CHILD LEAVE A LEGACY Intangible  Assessing the child’s goals and dreams  Providing resources, problem- solving and support to help patients reach towards achieving their goals and making dreams come true  The efforts of reaching towards the goal are more important than achieving the goal or completing the wish Tangible  Assessing how the children want to be remembered and what they want to leave for their families and friends to show their love  Helping patients make an impact by providing resources and support  Many families report deeply treasuring these meaningful efforts after the death

15. SOURCES  https://umb-eap.org/wp- content/uploads/pdf/DeathByAgeGroup.pdf https://umb-eap.org/wp- content/uploads/pdf/DeathByAgeGroup.pdf  Thompson, Richard H. The Handbook of Child Life: A Guide for Pediatric Psychosocial Care. Springfield, IL: Charles C. Thomas, 2009. Print.  Special thanks to all the children and their families who have taught us so much over the years

16. QUESTIONS?