The Dying Child

1. The Dying Child Circle of Life Community Coalition End of Life Toolkit Ministry Home Care Hospice and Wood County Aging and Disability Resource Center

2. Agenda • Children do die • Developmental stages of children and understanding of death • Communication • Why? • How? • Interventions and support • Qualities of resilient families • Resources Circle of Life Community Coalition End of Life Toolkit

3. Children Die From… Unexpected vs. expected • Infants: Birth defects, low birth weight, SIDS • 1 – 14 years: Accidents, cancer, suicide, homicide • 15 – 18 years: Accidents, suicide, homicide, cancer Circle of Life Community Coalition End of Life Toolkit

4. “As we cannot protect ourselves from death, so we cannot protect children. The traumatic experience of life belongs to both adulthood and childhood.” Rabbi Earl Grollman Circle of Life Community Coalition End of Life Toolkit

5. Coming to terms with the prognosis: • Diverts energy from cure seeking • Reinvests energy in the child/family • Often results in relief, peace (and guilt) • Trade future worry for present relationships Circle of Life Community Coalition End of Life Toolkit

6. Talking with children about dying • We hesitate to talk with children about dying. Why? • We want to protect them. • We don’t know what to say and we fear upsetting them more. Circle of Life Community Coalition End of Life Toolkit

7. Sweden Study: Parents Whose Children had Died • Parents who sensed that their child was aware of his/her own death were most likely to talk with the child. The older the child, the more likely the talk occurred. Religious parents were more likely to talk with their child. • No parents who talked with their child regretted doing so. • Many parents who did not talk with their children reported anxiety and depression after the death. New England Journal of Medicine, Sept 2004 Circle of Life Community Coalition End of Life Toolkit

8. Professionals helping parents • Support parents in their own strengths • Encourage normalcy in routines and consistency in discipline • Provide a sense of safety and importance to surviving siblings • Explain the dying process and allay fears of the child and family related to pain or dying alone • Prepare the child’s loved ones for grief Circle of Life Community Coalition End of Life Toolkit

9. Emotions commonly expressed by terminally ill children • Anger toward the illness • Anger toward other family members • Fear of regression or loss of functioning • Fear of separation, loneliness, abandonment Circle of Life Community Coalition End of Life Toolkit

10. Emotions commonly expressed by terminally ill children • Guilt on how the illness is impacting the family • Shame and embarrassment over physical changes caused by the illness • Fear of the unknown • Fear of suffering and pain Circle of Life Community Coalition End of Life Toolkit

11. Helpful responses to these emotions • Encourage expression of emotion • Be emotionally available; minimize separation; reassure of accomplishments • Allow privacy • Promise to protect from pain and suffering and to be with him or her Circle of Life Community Coalition End of Life Toolkit

12. The time to talk is when … • the child knows something is wrong • a parent sees the potential for the death of the child • a sibling is aware of losing a brother or sister Circle of Life Community Coalition End of Life Toolkit

13. Talking with the child • Consider the age and developmental stage of the child • Be open and honest even when you don’t know all the answers • Avoid euphemisms • Allow child to ask questions and to respond with emotions • Reassure of your presence and support • Have the child name someone they can use for support Circle of Life Community Coalition End of Life Toolkit

14. Kids may ask • When will I die? • Will it hurt? • Will you be okay? • How will I know it’s going to happen? • Who will be with me when I die? • What happens to me after I die? • Who will be with me after I die? Circle of Life Community Coalition End of Life Toolkit

15. Reassure the child.. • Parents and doctors will do everything to control the pain • People will support the family • It’s okay to feel sad and angry Circle of Life Community Coalition End of Life Toolkit

16. Reassure the child… • Child will not be alone at time of death • Death is not punishment • You are loved • You will always be remembered Circle of Life Community Coalition End of Life Toolkit

17. Creating a legacy • Activities, places to go, people to see • Ways to be remembered • Possessions to give away • Notes, videos, photographs • Planning memorial service Circle of Life Community Coalition End of Life Toolkit

18. Resilient families • Use clear terms in discussing death • Surviving children are prepared for and participate in the dying process and the funeral • Possess positive coping skills and model appropriate ways of expressing emotions • Parents are emotionally available to surviving children • Consistent discipline is provided to surviving children Circle of Life Community Coalition End of Life Toolkit

19. Resilient families • Family has a support system • Family recognizes that each member will grieve in his own way and time • Family undergoes few changes in its daily routine • Family acknowledge their own feelings and reactions • Family grows spiritually and emotionally Circle of Life Community Coalition End of Life Toolkit

20. “May you find peace in trusting yourself and in knowing that you have done the best you could do with the difficult circumstances you have been given.“ The Brain Tumor Center at Duke, Duke University, 2002 Circle of Life Community Coalition End of Life Toolkit