1. Tressia Shaw, MD Pam Roman, RN, CHPPN

3. Objectives Define palliative care and why it is important for infants and children with life limiting conditions Discuss examples of when palliative care could be useful for the child and family Identify the role of the interdisciplinary team in palliative care Discuss unique issues faced by the perinatal and newborn population

5. Childhood Deaths US: 53,287 deaths /yr 2007 statistics 29,138 in first year >50% in infant (<1year) period CDC 2007 data, published 2010 1 million seriously ill children with progressive medical conditions

6. Leading Causes of Infant Death Congenital malformations, deformations and chromosomal abnormalities Disorders related to short gestation and low birth weight Sudden infant death syndrome Newborn affected by maternal complications of pregnancy Accidents (unintentional injuries)

7. Trajectories of Childhood Death Institute of Medicine

9. Palliative Care “Living” in the face of a life limiting condition May occur during curative treatment options and at any point during the disease process Interdisciplinary family focused team approach Psychosocial, spiritual, comprehensive pain and symptom management, grief and bereavement support

10. Palliative Care Can…. Help define consistent goals of care Support best quality of life possible Assist in sibling support Help navigate difficult decisions and assist in advance care planning By…. Assessing patient/family’s understanding Treating distressing pain and other symptoms Using interdisciplinary services Reviewing goals of care and coordinating with the team

11. Benefits of Palliative Care Improved quality of life Improved pain and symptom control Increased satisfaction – patient and caregiver Reduction in number of inpatient days Increased likelihood of dying in preferred location

13. Hospice Package of services delivered by an interdisciplinary team to a patient who has a life expectancy of 6-12 months Also addresses symptom control, psychosocial care, spiritual care, and is family centered Focuses on end of life

14. Case Discussions Congenital CMV Anencephaly Hypoxic Ischemic Event at birth with uncertain prognosis

15. Issues unique to Infants/Children Birth and death may occur very close together Surrogate decision making Maintaining hope Uncertain/difficult prognosis for unusual conditions Children are not supposed to die Ethical concerns

16. Local Resources Ryan House www.ryanhouse.orgwww.ryanhouse.org Hospice of the Valley Pediatric Home Team – Palliative Care and Hospice www.hov.orgwww.hov.org New Song Center for Grieving Children www.hov.org/new_song_center.aspx www.hov.org/new_song_center.aspx Phoenix Children’s Hospital Palliative Care Program

17. Additional Resources National Hospice and Palliative Care Organization www.nhpco.org www.nhpco.org National Network for Pediatric Palliative Care http://www.network4pedspallcare.org/ http://www.network4pedspallcare.org/ Children’s Hospice and Palliative Care Coalition www.childrenshospice.org www.childrenshospice.org Get Palliative Care http://www.getpalliativecare.org/whatis/pediatric http://www.getpalliativecare.org/whatis/pediatric

22. Resources