WELCOME!

1. WELCOME! Thank you for joining Pediatric Palliative Care in Georgia: Where Do We Go From Here? Our program will begin shortly.

3. Pediatric Palliative Care in Georgia: Where Do We Go From Here? TODAY’S PRESENTER: Jennifer Hale, RN BS CHPN Georgia Hospice and Palliative Care Organization Rome, GA April 18, 2011

4. Defining the Issue: What does hospice mean for children? • Pediatric palliative care • Life-threatening illness • Focused on quality of life, relief of suffering • Physical, spiritual, emotional, psychosocial • Pediatric hospice • Life-limiting illness • Same focus but now has a time frame (6 mos)

5. Key Differences in Hospice and Palliative Care for Kids and Adults • Not small adults • Kids are more resilient • Limited clinical expertise • Kids have no legal voice • Social and economic factors more elastic

6. Diagnostic Categories – Who? • Group 1 - trauma, congenital disorders • Group 2 – CF, MD, HIV • Group 3 – Batten, Trisomy 13, Tay-Sachs • Group 4 – Severe CP, brain/spinal cord infection with hypoxia, anencephaly

7. What about in Georgia? • Infants less than 1 yr of age: • 1198 total deaths in Georgia in 20071 • 593 related to fetal/infant conditions such as lack of O2, fetal infection, premature birth, RDS • 194 related to birth defects such as spina bifida • 4 related to cancer • 56 were due to external causes

8. What about in Georgia? • Children from 1 year to age 19 • 931 total deaths in Georgia in 20071 • 569 were due to external causes including violence, auto accidents, drowning, etc • 62 were due to cancer • 35 were related to birth defects • 33 were respiratory disease related • 26 were related to infectious diseases • 20 were due to endocrine or nutritional disorders

9. Key Elements and Principles of Pediatric-Specific Palliative Care • Family-centered care • Respects values, beliefs and preferences • Includes patient and family in discussions of goals and decision-making

10. Key Elements and Principles of Pediatric-Specific Palliative Care • What is in the best interest of the child is the primary consideration in all decision-making

11. Key Elements and Principles of Pediatric-Specific Palliative Care • Health professionals have a responsibility to pursue comfort aggressively and minimize the child’s physical, emotional and spiritual suffering

12. Key Elements and Principles of Pediatric-Specific Palliative Care • Flexibility in pediatric program design and service delivery which facilitates access to services for children • Programs use current hospice/palliative care team models with multiple supports across settings and over time to ensure enhanced access

13. Key Elements and Principles of Pediatric-Specific Palliative Care • Program leadership develops and monitors systems to ensure pediatric palliative care and hospice IDT members are adequately trained, staffed and supported; this includes time and encouragement for self-care

14. Key Elements and Principles of Pediatric-Specific Palliative Care • Programs use current standards as foundation of a vibrant care delivery system

15. Key Elements and Principles of Pediatric-Specific Palliative Care • Pediatric programs employ specific performance improvement standards to identify areas of process failure and improve quality outcomes

16. You are HERE

17. Georgia’s State of the State • Pediatric Palliative Care Programs • Medical Center of Central Georgia • Childrens’ Hospital of Atlanta (fledgling) • Pediatric Hospice Programs • Hospice Savannah (Butterfly program) • St. Mary’s Hospice in Athens • Hospice Atlanta

18. Georgia Alliance for Pediatric Hospice and Palliative Care (GAPHPC) • First meeting December 2010 • Established stakeholders • Identified purpose • Started network development • Hosted by GHPCO but is a true alliance • Slow progress

19. Section 2302 PPACA of 2010 • PPACA passed March 2010 • Section 2302 required state Medicaid programs to implement rules that would permit children on hospice to also receive concurrent “curative” therapies and provide reimbursement for both providers • Does not address reimbursement for palliative care (children with >6 mo prognosis do not qualify for this provision)

20. Section 2302 PPACA of 2010 • In Georgia • Department of Community Health retroactively implemented the provision by placing the language of the law directly into the Medicaid Provider Manual • There has been no update to the reimbursement process so providers seeking to utilize the provision must work with the Department on a case by case basis to have claims paid manually

21. Building the Village… • Ask which providers in your area are already providing care to kids (if any) • Are there community-based organizations that offer emotional, physical, spiritual or financial support to families dealing with a chronic or life-limiting illness in a child?

22. Building the Village… • Are there services that provide what might be considered palliative care but don’t know they are? • Circle the wagons – when you offer help, really mean it • Help the statewide effort!

23. What to say to someone who has lost a child… • Do listen – every grief needs 1000 tellings • Do read about grief, improve your understanding of the experience of grief • Do say the name of the child who died – this provides affirmation • Do be patient… • Don’t say “I understand” – even if you’ve had a similar experience, each person is very different • Never say “You could always have another child” or “It’s good you had other children” – each child is precious and unique!

24. Resources • The National Hospice and Palliative Care Organization (NHPCO) – www.nhpco.org • Caring Info – Community Resources – www.caringinfo.org • Initiative For Pediatric Palliative Care – www.ippc.org • Center to Advance Palliative Care – www.capc.org

25. Questions?

26. Please complete our survey! To assist us in our documentation to assess the participation, effectiveness, and success of our programs, please take a moment to complete our survey. You can access the survey with the following link. Thank you! http://www.surveymonkey.com/s/XQQN95J