Grieving the Living: Integrating Grief Theory Early in Pediatric Palliative Care

1. Grieving the Living:Integrating Grief Theory Early in Pediatric Palliative Care Faith Kinnear Taryn Schuelke

2. Disclosures • None

3. Objectives • Identify ambiguous loss and grief at time of diagnosis in children with complex or life threatening illness • Define assumptive worlds and utilize the theory as a framework to approach families early in pediatric palliative care • Incorporate strategies through case studies to establish rapport and rebuild trust with families

4. Palliative Care Scope of Service https://www.google.com/search?rls=com.microsoft%3Aen-US%3AIE-Address&biw=1920&bih=963&tbm=isch&sa=1&ei=EexqXMXCNoXw_AbBwZXABw&q=palliative+care+&oq=palliative+care+&gs_l=img.3..0l2j0i67j0l7.417867.419479..420272...0.0..1.564.2710.0j2j2j0j3j1......0....1..gws-wiz-img.......0i24j0i8i30j0i5i30.dk8gQdX_6QM#imgrc=KsqVL_lvlV_S1M:&spf=1550511543715

5. Life Limiting Diagnoses • In utero diagnosis • Birth event: • HIE, CP • Accident • Brain Tumor diagnosis • New dx of a syndrome, epilepsy, etc.

6. Caregiver Response

7. Caregiver Response to Diagnosis • Anger • Why my child • Responsibility • What did I do • Bargaining • If you save them, I’ll… • Uncertainty • What now • Relief • I knew they weren't well • Family stress • Marital, siblings • Provider • How do I care for them • Do something • Best care, team • Seizing opportunity • Making the best of it

8. Grief Theory • Stages of Grief • Kubler-Ross

9. Assumptive Worlds Theory • Term first used by psychiatrist Collin Murray Parkes (1971) • Ronnie Janoff-Bulman (1989) identified three core assumptions that shape worldview: • Benevolence of the World • “How could this happen?” • Meaningfulness of the World • “But, we did everything we were supposed to do.” • Worthiness of Self • “It’s not fair. We’re good people.” • One framework for understanding loss and trauma • An assumptive world can shattered and then rebuilt

10. What Does it Look Like? • Shock • Confusion • Denial • Avoidance • Sadness • Loss of trust • Coping looks different for every family

11. Ambiguous Loss • Physically absent but psychologically present • Or the reverse • True loss that causes grief

12. Other Types of Losses and Grief • Secondary Losses • Security • Ideal • Normalcy • Control • Faith • Job • And many more • Types of Grief • Cumulative • Disenfranchised • Delayed www.whatsyourgrief.com

13. Case 1 • 4 wk old baby girl with Down Syndrome and severe CHD among other anomalies • In CVICU • Awaiting news on cardiac repair • Social: Single mother taking college courses, lives with her mother, and Spanish speaking. • PC consult: goals of care, additional psychosocial support

14. Case 2 • 15 yr old boy with GBS at 5 weeks of life that left him neurologically devastated • Seizures, dysautonomia, gtube dependence • 4 admissions in 3 months • Social: mom and dad, no home nurses, dad does all care, mom’s mom also in home • PC consult: goals of care, medical decision making

15. How Can We Help? • Allow them to grieve their loss • Recognize their strength in coping with loss • Time • Build trust • Help rebuild their new assumptive world

16. Summary • Palliative Care can support families early in the medical course and follow throughout illness • The ambiguous loss of a life limiting diagnosis causes real grief • Families assumptive worlds are shattered, but can be rebuilt in a healthy way • Anyone can validate these losses and support families in the rebuilding process

17. References The experiences of families living with the anticipatory loss of a school‐age child with spinal muscular atrophy – the parents’ perspectives. Bao‐Huan Yang PhD, RN, Pei‐Fan Mu PhD, RN, Wen‐Sheng Wang PhD First published: 01 August 2016 |https://doi.org/10.1111/jocn.13312 Quality of life and anticipatory grieving among parents living with a child with cerebral palsy Ekhlas Al‐Gamal BSc MSc PhD RN First published: 04 June 2013 https://doi.org/10.1111/ijn.12075 Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature. Joanna Smith BSc (Hons) MSc PhD RSCN, Francine Cheater MA (Hons) PhD RGN, Hilary Bekker BSc MSc PhD First published: 14 January 2013 https://doi.org/10.1111/hex.12040 "Living in the Dragon's Shadow" Fathers' Experiences of a Child's Life-Limiting Illness Davies, Betty ; Gudmundsdottir, Maria ; Worden, Bill ; Orloff, Stacy ; Sumner, Liz ; Brenner, Paul Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study Anna Collins, Nicole Hennessy-Anderson, Sarah Hosking First Published March 7, 2016 https://doi.org/10.1177/0269216316634245 Child and Adolescent Social Work Journal December 1989, Volume 6, Issue 4, pp 259–270| Grieving for the loss of the perfect child: Parents of children with handicaps Beder, J. (2004-2005). Loss of the assumptive world – How we deal with death and loss. Omega, 50, 255-265. Ronnie Janoff-Bulman (1989). Assumptive Worlds and the Stress of Traumatic Events: Applications of the Schema Construct. Social Cognition: Vol. 7, Special Issue: Stress, Coping, and Social Cognition, pp. 113-136.https://doi.org/10.1521/soco.1989.7.2.113

18. THANK YOU!