1. Joanne Cacciatore, Ph D, MSW, FT Angela ONeil, MD Facing the Death of a Child: Perinatal and Pediatric Palliative Care and Support

2. Introductions...

3. It always starts with a story.. It always starts with a story..

4. Karla & Theos Love Story....

5. Abnormal

6. What do you wish would have been done differently?

7. How information is given. Testing Who should give information?

8. { With or without parent input? Parent concerns

9. People who have not had a child die cannot understand that. They can try to understand, they can attempt to imagine what its like, they can absolutely be helpful and supportive and witness our pain without trying to change it. They can try to understand, they can attempt to imagine what its like, they can absolutely be helpful and supportive and witness our pain without trying to change it. But they cannot know.

10. Children with Life-Threatening Conditions

11. Epidemiology of Childhood Death 2011 data 6.9 million children died (2.6 million/yr stillbirths) 73% infants <1 (n=5m) 52% stillbirth (n=2.6m) 52% stillbirth (n=2.6m) 20% within first 24 hrs (n=975k) 20% within first 24 hrs (n=975k) 14% between 1-30 days (n=732k) 14% between 1 -12 mo (n=732k) 7.5% age 1-4 (n=516k) 5.3% age 4-9 (n=365k) 14.2% age 9-19 (n=980k) Froen, Cacciatore, et al., 2011. The Lancet Series; Carter, Levetown and Friebert. Palliative Care for Infants, Children and Adolescents. Second Edition. 2011.

12. Effect of Palliative Care in the Hospital Increased hospice discussion (22% more) Earlier DNR order (6 days) Fewer deaths in the ICU (16% less) Child suffered less pain (19%) Parents felt more prepared during childs last month of life and at death Wolfe, J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J, et al: Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 26(10):1717-1723, 2008.

13. { Active, total care of childs body, mind and spirit Begins when illness is diagnosed Continues regardless of whether or not a child receives treatment directed at the disease Address physical, psychological & social distress Multidisciplinary approach Provided anywhere, including the home WHO Definition of Palliative Care

14. Appropriate for children and families with life- threatening illness Enhances quality of life Intends to neither hasten or postpone death Any child with life limiting disorder WHO Definition of Palliative Care

15. To have care of Palliative Care team- The child does NOT need to be: Dying or actively dying On Hospice Giving up hope or Doing nothing DNR and/or DNI

16. The child can be: Receiving curative treatment Receiving complex care Hoping for a miracle Local or long distance patient Who Should Get a Peds Pallliative Care consult?

17. Serious illness affects: Patient quality of life Sibling growth, development, and behavior Parental quality of life (esp bereavement) Interpersonal relationships Finances and career Family structure Structure of home Individual and collective stress levels Why consult Palliative care early?

18. Effect of Critical Illness on Parents Altered parental role Fear of childs suffering Fear of childs death Unknown long term outcome Inconsistent information Minimal communication Interpersonal relationships Concerns over economic outcomes Needle, JS, ORiordan, M, Smith, PG. Parental anxiety and medical comprehension within 24 hours of a childs admission to the PICU. Pediatric Crit Care Medicine 10(6), 2009, 668-674.

19. Perinatal Palliative Care Program Goals To help families understand the diagnosis and probable outcomes for their baby To help families make decisions based on the love that they have for their baby To assist families in cherishing the time between the diagnosis and death of their baby To honor the unique and special qualities of each baby To emphasize the quality of life over the quantity of life To reduce the emotional, spiritual and psychosocial suffering using interventions sensitive to cultural, religious and personal beliefs

20. Services are additive to care already in progress Supportive, not a substitute How can we help? -How can we help the FAMILY? Focus on psychosocial dimension, ethical end of life decision making and alleviation of distressing symptoms Continuity of care Palliative Care Team

21. Perinatal Palliative Care Fetal or neonatal diagnosis of life limiting anomaly Extreme prematurity (22-24 6/7 week gestation) wishing to pursue comfort care Critically ill neonates refractory to medical treatment Pediatric Palliative Care Terminal diagnosis of life limiting disorder or disease Treatment and management of pain Disclosure Palliative Care Team

22. Interdisciplinary Team Members DoctorNursing Child Life Chaplain or other spiritual leader Psychology Social Work Palliative Care Team

25. Unity is strength… when there is teamwork and collaboration, wonderful things can be achieved. -Mattie Stepanek (1990-2004)

26. { I am a grieving mother, a bereaved mother who chooses to continue to live. I can only hope that my life can somehow reflect even a small bit, the beauty and love I was so privileged to touch when I met my son.. and shared in his life, and in his death.

27. The love of a parent is not contingent upon the amount of time we had with our child. Love simply cannot be measured in time. Joanne Cacciatore