The document outlines the fundamentals of pediatric palliative care in California, emphasizing the state's pediatric palliative care benefit which includes a numbered letter and a Medicaid waiver. It discusses the importance of early access to palliative care for children with life-threatening conditions, the role of multi-disciplinary teams, and the benefits of improved communication between families and healthcare providers. The document also provides details on how to get involved in advocacy for better care and offers resources for further information.

1. Fundamentals of Pediatric Palliative Care California’s Pediatric Palliative Care Benefit Leslie Adams MSW, LICSW Lori Butterworth Devon Dabbs Gay Walker RN, CHPC

2. Medicaid Waiver Section 1915(c) Home and Community-Based Services Waivers Supports services provided in home and community based settings An alternative to institutional or long-term care facility placement Cost neutrality Enrollment caps required In today’s web-conference we will: Talk about the basic principles and fundamentals of pediatric palliative care for about 15 minutes. Present the two components of California’s Pediatric Palliative Care Benefit: Numbered Letter and Waiver for about 30 minutes. Let you know how to get involved in the movement to improve care for children with life-threatening conditions. Give contact information and links to more information about the waiver, the coalition and the Department of Healthcare Services. Q and A

4. World Health Organization (1998) Care of child’s body, mind, and spirit Starting at the point of diagnosis and continuing regardless of whether curative therapies are pursued Expertise of a multidisciplinary team along with family and community resources

5. Institute of Medicine: When Children Die (2002) Palliative care seeks to prevent and relieve the physical and emotional distress produced by a life threatening medical condition or its treatment Help patients and their families live as normally as possible Provide timely and accurate information and support in decision-making

6. Pediatric palliative and/or hospice care is both a philosophy and an organized method for delivering competent, compassionate and consistent care to children with chronic, complex and/or life-threatening conditions and their families. This care focuses on enhancing quality of life , minimizing suffering , optimizing function and providing opportunities for personal and spiritual growth. National Hospice and Palliative Care Organization (2009)

7. Pediatric palliative care can be delivered concurrently with life-prolonging care or as the main focus of care and is treatment that should be started early in the trajectory of the condition. It preserves the integrity of the family during the disease progression, addressing anticipatory grief and bereavement support following the death. Children’s Hospice and Palliative Care Coalition (2007)

8. PPC within the context of California’s Benefit Concurrent with curative therapies Family-centered communication Focus on quality of life and relief of suffering Use of multidisciplinary team

9. Area for Improvement Pain and Symptom Management 89% of children experience “substantial” suffering in the last month of life. >80% report treatment for pain <50% report successful treatment for pain (Wolfe, N.E.J.M., 342:326, 2000) 90% of children’s pain can be alleviated (Komatsu, IPPC 2008)

10. Area for Improvement Parents consider communication key. (Meyer, Pediatrics, March 2006) Parents understand prognosis nearly 200 days after physician recognition. This disparity hampers end of life care. (Wolfe, JAMA, 2000) Parents carry clinician’s words and behavior with them forever. Communication, Relating humanely

11. Area for Improvement End of Life Choices, Continuity of Care Most children die in the hospital, many in ICU If death is from a treatment related cause, chance of dying at home is almost zero. (Wolfe, NEJM, 2000) Previously, no organized system to track children and their care between hospital and home

12. Curative treatment Palliative treatment D E A T H Bereavement Historical Model of Palliative Care Diagnosis

13. Curative treatment Palliative treatment D E A T H Bereavement Alternative Model of Palliative Care Diagnosis

14. Curative treatment Palliative treatment Death Pediatric Model of Palliative Care DIAGNOSIS Loss

15. Curative treatment Palliative treatment Waiver: Getting in Earlier DIAGNOSIS Loss

16. Palliative Care, Hospice, Home Health Home health provides skilled care and is rehab oriented. The philosophy is to empower patient toward independence through intermittent visits at home. Hospice care provides interdisciplinary team expertise at end of life, including pain and symptom management. The philosophy is to focus on quality of life. Palliative Care may include both of these services.

17. When we get in earlier, there is time for… Relationship building--Trust Address family’s unique needs Relationship building between teams

18. Patient and Family Outcomes Child receives expert pain and symptom management With End of Life Choices, parents are better prepared. (Dussel, Journal of Pain and Symptom Management, 2009) Better communication, parents have better understanding, feel better understood (Hays, JPM, 2006) Increased continuity of care (Hays, JPM, 2006)

19. Provider Outcomes Increased comfort level in communicating life-limiting clinical findings and treatment options (Hays, JPM, 2006) Increased satisfaction in coordination and communication between providers (Hays, JPM, 2006)

21. Community Based Palliative Care Coordination California’s Pediatric Palliative Care Benefit Lori Butterworth and Devon Dabbs

22. Outline of session: California’s Pediatric Palliative Care Benefit CCS Numbered Letter 1915 Federal Waiver What is a “waiver” and why did California need one? Children who might qualify for the waiver Counties Conditions Medi-Cal/CCS What is available to children in non-waiver counties The Coalition – beyond the waiver

23. California’s Pediatric Palliative Care Benefit Part 1 – Numbered Letter What palliative care services are currently available under the State Plan? What are the barriers to making these services available to children? Solution : Pediatric Palliative Care Numbered Letter issued to all counties in California.

24. California’s Pediatric Palliative Care Benefit Part 1 – Numbered Letter You can download a copy of the “CCS Palliative Care Numbered Letter ” on our website: http://www.childrenshospice.org/benefit/numbered-letter/ All counties in California can use this numbered letter. Now! This is independent of the waiver.

25. California’s Pediatric Palliative Care Benefit Part 2 – The Waiver Why wasn’t the numbered letter enough? It only allows for home-health agencies to bill for services – not hospices. Therefore, the experts in pain and symptom management and end-of-life care were left out of the care continuum. CHPCC felt very strongly that without hospice expertise, children would continue to suffer unnecessarily at great expense to the State.

26. More facts and figures Children with complex, chronic conditions spend most of the last year of their lives at home This means that high quality pain and symptom management needs to be able to be delivered in their communities, where they are (Feudtner, JAMA, 2008)

27. More facts and figures A major complaint from parents of children who die is fragmentation of care Children receive care at many different sites Health care providers rely heavily on parents/caregivers to provide continuity Families have to tell their stories over and over Quality and accuracy become the family’s burden

28. How Did This Happen? Federal hospice eligibility regulations: were developed in 1970s for adult cancer patients require that a doctor and patient/parent sign an agreement stating that the patient has less than 6-months to live (if the disease follows its normal course) require that patients stop all treatment intended specifically to cure their disease or prolong their lives

29. The Nick Snow Act What is the Nick Snow Act and why did we need it? Assembly Bill 1745 mandated that: The State of California apply for a federal waiver allowing for pediatric hospice and palliative care services to be delivered concurrently with curative treatment, No child enrolling in the waiver would lose any of their CCS benefits (as long as they are not duplicative), Waiver content had to be developed with stakeholder input and approval.

30. The Nick Snow Act You can download a copy of the Nick Snow Act and read about it in more detail: http://www.childrenshospice.org/coalition/ab-1745-the-nick-snow-childrens-hospice-palliative-care-act-of-2006/ “ I don’t see why we need to give up all of these services just because we want to get better.” Nick Snow, the boy who flunked hospice…twice!

31. California’s Pediatric Palliative Care Benefit Part 2 – The Waiver What is the waiver? A federally approved Medi-Cal demonstration project that enables children with certain CCS eligible medical conditions to: receive curative treatments AND home and community-based palliative care services provided by hospice agencies along with home health and other appropriate service providers

32. California’s Pediatric Palliative Care Benefit Part 2 – The Waiver The waiver contains additional services not currently available under the state plan like care coordination, respite, expressive therapies, and bereavement The waiver allowed us to add services provided by hospices while children are still receiving curative therapies.

33. California’s Pediatric Palliative Care Benefit Part 2 – The Waiver Child must meet all of the following: Be under 21 yrs of age Have “full scope,” “no share of cost” Medi-Cal Reside in a participating county Have a CCS eligible medical condition Choose to participate (patient or parent/legal guardian)

34. California’s Pediatric Palliative Care Benefit Part 2 – The Waiver Year 1 (300) July 2009 Alameda Monterey San Diego Santa Clara Santa Cruz Year 2 (801) January 2010 Alameda Monterey San Diego Santa Clara Santa Cruz Humboldt Marin Orange Sacramento San Francisco Sonoma Year 3 (1802) January 2011 Alameda Monterey San Diego Santa Clara Santa Cruz Humboldt Marin Orange Sacramento San Francisco Sonoma Fresno Los Angeles

35. California’s Pediatric Palliative Care Benefit Part 2 – The Waiver Eligible Medical Conditions: Cancer Cystic Fibrosis Brain or head injuries Spinal muscular atrophy Duchenes’ muscular dystrophy dependent on a ventilator Intestinal problems and dependent on IV nutrition Liver or bowel transplant Heart defects or conditions Problems following a transplant Leukodystrophies

36. California’s Pediatric Palliative Care Benefit Part 2 – The Waiver 2 new positions Care Coordinator (Social Worker or Nurse) – employed or contracted with hospice or home health agency CCS Nurse Liaison – at county CCS office

37. The Case for Coordinated Care Identified by Waiver Advisory Group as the most critical unmet need for children with life-threatening conditions and their families. Goal: Developing a reimbursable Care Coordination service CCS Case Managers – average 1 case manager to 700/1,000 children - Agency Based Case Managers work within institution/agency CCS Nurse Liaison – New Position Community Based Care Coordinator – New Position – average caseload 1/20

38. Keystone to Success STATE PLAN/EPSDT Services See Numbered Letter Waiver Services Care Coordination Respite Care Bereavement Counseling Expressive therapies Family Training Community Services Family + Care Coordinator Coordination of Services

39. Children’s Hospice and Palliative Care Coalition For more information: ChildrensHospice.org This presentation, numbered letter and waiver materials are available to download. Join a regional collaborative Northern, Central, Southern California http://www.dhcs.ca.gov/provgovpart/initiatives/ppc/Pages/ProgramOverview.aspx

40. Children’s Hospice and Palliative Care Coalition Mission Statement The mission of Children’s Hospice and Palliative Care Coalition is to ensure compassionate, comprehensive care for children with life-threatening conditions. Together with their families, we speak out for those too little or too sick to speak for themselves, and create programs that directly improve the quality of their lives. We need your voice! Join us…everyone is welcome!

41. Children’s Hospice and Palliative Care Coalition We need your voice! Join us…everyone is welcome! Individual Membership $50 Organizational Membership $500 Legislative Advocate: Terri Cowger Hill, Cowger and Associates A voice for children in Sacramento!

42. Children’s Medical Services Branch California Children’s Services Waiver Analysis Branch Jill M Abramson, MD MPH FAAP, Section Chief, Program Development Children's Medical Services, DHCS 1515 K St. , Ste 400 Sacramento, CA 95814 916-327-2487 [email_address] California State Department of Healthcare Services

43. To find the best in others; To give of one's self; To leave the world a bit better, To know even one life has breathed easier because you have lived - This is to have succeeded. Ralph Waldo Emerson

44. Benefit Education Support and Training – BEST in Pediatrics