1. Building a Pediatric Palliative Care Program in a Hospice Environment Diane Baldi RN CHPN Chief Executive Officer Hospice of the Sacred Heart Wilkes Barre, Pennsylvania

2. Objectives Identify and assess the need for a pediatric palliative care program Identify partners to assist in development of pediatric palliative care team Identify methods for establishing the team Identify benefits and challenges of a pediatric palliative care team Assess effectiveness of pediatric palliative care team

3. Introduction Hospice of the Sacred Heart ADC 230 100+ staff members Medical Team PATH program Bereavement programs Pediatric Program

6. “Sometimes in life there is that moment when it’s possible to make a change for the better. This is one of those moments.” Elizabeth Glaser

8. Concurrent Care Requirement Section 2302 of PPACA (Patient Protection and Affordable Care Act of 2010) Requires the state Medicaid program to pay for both curative/life-prolonging treatment and hospice services for qualifying children under the age of 21 Physicians must still verify that the child has a prognosis of 6 months or less

9. NHPCO Standards of Practice for Pediatric Palliative Care Deliver safe, effective, high quality care for children and their families Enhance effective identification of and response to family needs, including the specifics of care required for children of all ages

10. Standards of Practice Continued Improve knowledge, skills and support for care providers Identify unmet needs in care delivery so that organizations may expand their services or develop partnerships with other care providers to fill these gaps and address challenges found in providing care to children and their families

11. Identifying and Assessing Need Census info Referral system Cost, time, need of program NHPCO Facts and Figures April 2009 18.2% children 0-19 died at home (only 56% hospices have cared for children) East vs. West

12. Fundamental Differences Caring for Children Children are not small adults Prognostication complicated Fragmented care Legal voice absent Children are members of many communities Grief has devastating implications

13. Identifying Partners to Assist in the Development of Your Team PACT Local tertiary care centers NHPCO Local Pediatricians Bereaved families Home health agencies

14. Methods for Establishing Pediatric Team in a Hospice Environment Policies/Procedures 24/7 specially-trained providers Key contact person On call pediatric consultative support available 24hr/day Staff education/conferences Ethics Committee

15. Establishing Pediatric Team continued…. Volunteers On call staff Pediatric library Financial Resources Partner with local schools, social services, home health, faith groups All therapies on hand

16. Ava: A Case Study 5 year old little girl with a glioblastoma multiforme Being treated at CHOP Family,home,staff, Pediatrician Challenges Benefits Lessons learned

17. Summer: A Case Study 11 year old girl with advanced osteosarcoma Family School IPad Palliative sedation Medical Director

18. Gary: A Case Study 18 year old with leukemia Senior prom Media and social challenges Bereavement needs Communication

19. Benefits of a Pediatric Palliative Care and Hospice Team Team environment, reward New experiences and knowledge New opportunities to work with tertiary care centers (Hospice team meets the child and family in the acute care setting to develop goals together) Assisting patients and families during this difficult transition

20. Challenges of a Pediatric Care Team Social Network Staff concerns Lack of experience in caring for children High tech palliation On call staff Respite care, volunteers Differences in caring for adults vs. children

21. What We’ve Learned… Senior management and BOD by-in is imperative Financial implications Importance of gathering team from admission to death to bereavement Major involvement of pastoral care, social services for family and team Importance of preserving memories We have a long way to go….and much to learn

22. Still learning……. Continue educational opportunities Partner with local schools and social service agencies Partner with specialty healthcare agencies Contact local/regional pediatricians Make respite available to families Awareness of agency stress

23. What We’ve Learned continued… Support staff Bereavement care Pediatric palliative care orders QAPI project to assess areas of improvement

24. Hospice Agency Responsibilities Debriefings and discussions of patients Remembrance services Foster collaboration with physicians Outreach programs and in-services to hospitals, physicians, and the community Recognize the need for staff time off and rotation

25. Hospice Agency Responsibilities continued…. Involve staff in forms development Provide emotional support Reassignment to different duties EAP Communication Care Planning/Documentation

26. In conclusion…. A pediatric palliative care program that: incorporates a robust set of both medical and psychosocial interventions has flexibility around eligibility and payment sources is committed to education and collaboration can achieve and maintain a successful palliative and hospice care program for children.

27. Questions, Comments, Suggestions???

28. Resources NHPCO “Standards of Practice for Pediatric Palliative Care and Hospice” 2009 NHPCO “Concurrent Care for Children Implementation Toolkit” NHPCO “Facts and Figures: Pediatric Palliative and Hospice Care in America” April 2009 Pediatric ELNEC

29. Thank You!!! Diane Baldi RN CHPN CEO Hospice of the Sacred Heart 600 Baltimore Drive Wilkes Barre, PA 18702 (570) 706-2400 dbaldi@hospicesacredheart.org