Fundamentals of Pediatric Palliative Care

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. 2

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

8. PPC within the context of California�s Benefit

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.

11. Area for Improvement

12. The historical or traditional model of palliative care was described and made popular by the Canadian board of health in 1989. It describes attempts to cure and palliative care as separate and distinct entities, or two separate worlds that are mutually exclusive. This has often been referred to as a switch from curative or life prolonging care to palliative care. The historical or traditional model of palliative care was described and made popular by the Canadian board of health in 1989. It describes attempts to cure and palliative care as separate and distinct entities, or two separate worlds that are mutually exclusive. This has often been referred to as a switch from curative or life prolonging care to palliative care.

15. Hope and Hope can live imperceptively a long side of loss. . Hope and Hope can live imperceptively a long side of loss. .

16. Palliative Care, Hospice, Home Health

17. When we get in earlier, there is time for� Relationship building--Trust

18. Patient and Family Outcomes

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)

20.

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. Please send us your stories of its use � successful and unsuccessfulPlease send us your stories of its use � successful and unsuccessful

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

34. California�s Pediatric Palliative Care Benefit Part 2 � The Waiver

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

38. 38 Keystone to Success