Navigating Communication about Pediatric Death and Dying

1. Navigating Communication about Death and Dying in the Pediatric Setting “How did they fit my sister in that box?” Dana Dombrowski, MSW, LSW Kelly Gross, CLS, CTRS

2. Objectives • Discuss role of the palliative care team • Summarize why discussion about death in the pediatric setting is difficult • Identify ways to talk to children and their caregivers about death and dying • Identify interventions and resources • Identify ways that a home visit can be a supportive intervention

3. Pediatric Advanced Care Team PACT at CHOP • Consultative service • Multidisciplinary team • Interdisciplinary approach • Hospital and home settings • 24/7 Access for parents, clinicians • Clinical, Education, Research • Partners Program- Community Outreach

4. Team Communication: • Patient/Family • Primary Physician • Primary Medical Team (inpatient) • Sub-specialists • Consult services • Home Care • Nutrition • Pharmacy • Therapists (PT/OT/ST) • Psychosocial (Social Work/Art/Child Life/Music, etc) • Case Managers/Care Coordinators • Community resources( School, Town, County, State, Federal) • *When to have team communication

5. An Interdisciplinary Approach • Decreases stress amongst health care providers • Improves communication • Decreases conflict while improving collaboration • Increases competence and confidence • Increase quality of care • Improves ability to manage bereavement needs • Helps to improve caregivers knowledge and skills • Provides an environment where peers learn from each other in all areas: clinical, psychosocial spiritual, and emotional (Rushton,CH, Reder,E, Hall,B, Comelllo,K, Sellers,D, Hutton,N. Interventions to Improve Pediatric Palliative Care and Reduce Health Care Professional Sufferin. 2006) • Helps optimize continuity of care

6. Grief Assessment Includes • Type of grief • Reactions • Processes and tasks • Influencing factors • All family members (parents, siblings, extended) Glass et al., 2006

7. Attentive Listening • Encourage talking • Be silent • Acknowledge their feelings • Don’t change the subject • Take your time in giving advice • Encourage reminiscing

8. Myths and Truths Regarding End-of-Life Care Myths • Children will be overwhelmed by their diagnosis • Children do not really understand that they are dying • Talking about illness and death will take away hope Truths • Prognostication difficult • Developmental issues can affect communication and dying experience • Schools, communities are generally not prepared to deal with death of a child

9. Communication Strategies with Caregivers and Staff • Acknowledge difficulty • Importance of relationships • Type/Setting of discussion • Importance of listening and being available • Remember that children are observant • Checking back in is critical • Reassurance • Guilt Grollman, 1968

10. What Might Not Work • Having a “set agenda”. • Doing all the talking. • Not allowing silence. • Focusing on your own emotion/agenda. • Giving too many medical details. McDonagh, 2004

11. CommunicationStrategies • Ask clarifying questions to their tough questions • “I’m wondering why you are wondering about this today? • Be honest; the unknown is usually more anxiety provoking than the reality and children know something is wrong even if they are not told • Recognize that children will ask for information as they need it; need a balance of communication and play • Provide reassurance to the child

12. Communication Strategies • Use correct words to explain death; use literal terms versus concepts • Finding out what words the family utilizes – consistent language • Identify fears and misconceptions, offer reassurance and provide opportunities to play, create legacy items, have ongoing talks • Remember, you don’t have to have the answers; reflective listening skills • Seek out support in the community- you do not need to do this alone

13. Reminders for Caregivers • Professionals can be a support to help guide caregivers through difficult conversations • Every child will grieve in their own way, in their own time (ie: grief bursts) • Give children any “choices” available • Remind parents to not force the visit, or request to have the sibling kiss/touch the patient but offer as a suggestion (Ie: “if you want to hold your sister’s hand, you still can”) • Children need breaks • Play as a coping mechanism • Keepsakes

14. Learning from our families: Parents/Guardians • Children have real and difficult questions • Fear of saying the “wrong” thing • Losing a child seems so unnatural • Boundaries/Attachment • Lifetime of grieving

15. Tasks and Activities… also – games and music can be/become a source of support

16. Developmental Concepts of Death • A child’s reaction to death corresponds to their developmental/cognitive age. • Birth to 2 years: No cognitive understanding of death • Preschool: Does not see death as permanent • School age (6-9 years) : Emerging understanding of death • School age (9-12 years): Death is final and irreversible • Adolescent: Understands the implications of death

17. CHILD LIFE SPECIALISTS • Child Life Specialists are trained professionals who have a background in child development and aide in helping patients, siblings and other family members navigate various medical experiences. • As a Child Life Specialist on the Pediatric Advanced Care Team (PACT), my goals of working with patients and siblings are: • Provide Age appropriate play and activities to encourage expression of feelings both in the hospital and home setting • Foster a therapeutic relationship with patients, siblings and family which can minimize stress and anxiety • Increase familiarity/prepare patients and sibs for impending loss • Promote development of adaptive coping strategies for managing changes resulting from life threatening illness • Support siblings through bereavement process with scheduled home visits and follow up after patient death

18. Communication Strategies with Children • Death is a taboo topic and often adults will avoid talking about death around children as a way of protecting them. One of the most important strategies in discussing death with children is the way we communicate with them. • Create a safe place for children to talk and or ask questions • As the child clarifying questions to get to the root of what they are asking • Avoid euphemisms • Common euphemisms: sleeping, gone away, went to be with God • Being honest on a level of their developmental understanding

19. Sibling Sentence Starters… • Encourage parents/caregivers to tell their children about the death of their brother or sister. • “Do you know why you came here today?” • “_____ has been very sick. The doctors and the nurses have tried very hard to help your brother or sister. They tried a lot of different medicines (use your judgment here – do you need to reference the ventilator etc) but the medicines (and/or the machines) could not help your brother or sisters body anymore.” • “______ is very hurt. The doctors and nurses tried to help his / her body but he / she was too hurt. Your brother / sister was so hurt that his / her lungs could not breathe anymore. He / She is not breathing anymore. Do you know what that means?” • Either of those scenarios can lead to  “Your brother / sister died here at the hospital today. • Do you know what it means when someone dies?

20. Funeral and Burial Preparation “How did they fit my sister into that box?” • Who will be attending the services? • What will the body look like? • Where will the services be held? • When will the services take place? • Why do we have services?

21. Tools and Interventions • Child Life Specialists provide therapeutic tools and interventions as outlets for children to grieve, express emotion or to help identify appropriate coping strategies

22. Legacy

23. Books and workbooks

24. Community Resources • Peter’s Place – Wayne, PA • Center for Grieving Children – Philadelphia • Gilda’s Club – Warminster, PA • The Compassionate Friends – multiple locations • Camp Erin – multiple locations • Supporting Kidds – Hockessin, DE • Comfort Zone Camp – multiple locations • Safe Harbor/Abington Health – Abington, PA • The Center for Loss and Bereavement – Skippack, PA • The Center for Grief Support at Samaritan Hospice, Marlton, NJ

25. Web based resources • CHOP.edu/healthinfo/grief-and-bereavement.html • CHOP.edu/healthinfo/discussing-death-with-children.html • AChildInGrief.com • Compassionatefriends.org • NHPCO.org • CHIonline.org • Nichd.nih.gov • Childrengrieve.org • Compassionbooks.com • Hellogrief.org • Centering.org • Griefwatch.com

26. Other Resources • 5 Wishes, Voicing My Choices, My Wishes • NY Grief Booklet

27. 5 Wishes • First living will to address personal, emotional and spiritual needs, along with medical wishes • How we use these in the pediatric setting • Can be changed at any time

28. Home Visits as an Intervention • Glimpse into the family’s daily life • Control • Home as a comfortable setting • Can be utilized both before and after a patient dies

29. Case Study • Teenage boy with terminal cancer • Treated for several years • Use of clinical trials • Family • Key decision makers • Importance of faith • How we Helped • Hospital sessions and home visits • Ongoing discussion – letting the family lead the way

30. Thank You • Questions • Comments • Contact information: • Dana: dombrowskd@email.chop.edu • Kelly: grosske@email.chop.edu