California s Pediatric Palliative Care. Jill Abramson, MD, MPH November 1, 2012

Transcription

1 California s Pediatric Palliative Care Jill Abramson, MD, MPH November 1, 2012

2 Outline How a program can change a life Pediatric Palliative Care PFC Overview PFC Results Challenges PFC in the future

3 Case Part 1: the boss comes to town

4 What Is Pediatric Palliative Care? Pediatric palliative care (PPC) is both a philosophy and a method for delivering competent, compassionate, consistent, culturally appropriate care to children with chronic, complex and/or lifethreatening conditions and their families. PPC includes end of life and long term supportive care

5 What Is Pediatric Palliative Care Outside The Hospital? Family-centered & long term goaloriented Services in setting aligned with goal home, clinic, school Pain/symptom management Support for child Social & emotional & age-appropriate Support for family

6 Why Do We Need Pediatric Palliative Care Outside the Hospital? Supports family decision-making Includes family members on the care team Improves continuity of care across settings Decreases number of medical crises Decreases hospital admissions 6

7 Nick Snow Story AB 1745, 2006 Diagnosed with neuroblastoma at age 6, chemotherapy, radiation, bone marrow transplant, many experimental therapies for 7 years, remission for 3 years, then died from infection Saw the effect of his disease on brother and parents Went to D.C. to tell Congress Federal Hospice rules do not work for children.

8 Children s Medical Services and Palliative Care 2007: CCS pilot waiver program Partners for Children (PFC) 2007: CCS numbered letter describing available State Plan services 2009: PFC numbered letter 2010: PFC begins 2010: Concurrent Care for Children

9 Pediatric Palliative Care Music therapy Care coordination Pain management Child Life therapy Art therapy massage Family Centered Care Plan based on family/child desires Counseling Bereavement Care 9

10 What Services Are Offered? Community-Based Care Coordination Assessment of goals of care of participant & family Creation of Family-Centered Action Plan (F-CAP) with input from family and interdisciplinary care team Communication of plan across all settings including family, CCS & health care team, school or other settings 24/7 on call nurse Advocacy for the child

11 What Services Are Offered?... Pain and symptom management Expressive therapies Art, music, play, massage Respite care In-home and out-of-home Family education Bereavement support for child as end of life approaches, for family before and after death

12 Who is eligible? Applicant must meet all of the following: 1. Be under 21 yrs old 2. Have full scope Medi-Cal 3. Reside in a participating county 4. Have a CCS-eligible life-threatening medical condition 5. Meet Waiver Level of Care

13 Who is Eligible? (cont.) The child must be on only one HCBS waiver Children enrolled in the waiver will not be eligible for a hospice benefit Although the child isn t enrolled in hospice, hospices and home health agencies (HHAs) can provide palliative care waiver services through the waiver

14 Partners for Children Enrollment Referral CCSNL Care Coordinator

15 Case Part 2 A.Z. was referred for PFC directly to CCSNL by her GI physician at the SCC. Prior to referring, the GI MSW had called CCSNL to give a lot of information about A.Z. s history, and how much they believed A.Z., and her mother, would benefit from PFC.

16 Enrollment- Referral Referral sources Specialist or other SCC team member Primary care physician Hospital team Friends/family/other community CCSNL case finding

17 ENROLLMENT: CCSNL Independent County CCS Nurse Liaison is selected by county to work with waiver clients/families CCSNL Finds/enrolls eligible client Connects client with agency Reviews care plan Authorizes services Communicates, collaborates, coordiantes care with client and agency Assists in obtaining state plan services Provides local oversight

18 ENROLLMENT: CARE COORDINATOR Nurse and Social Worker Meet with family, Develop care plan (F-CAP), Coordinate waiver, non-waiver and community services Meet bimonthly with family and CCS Nurse Liaison for family centered conference

19 Enrollment and Services Around 150, age, demographics of enrolled (around 50% Spanish speaking) Medical conditions (MD, CF, cancer, HIE, intractable seizures, etc. ) Wait list (over 50) Most valuable service: care coordination, expressive therapies

20 Case follow up Currently, A.Z. still is reluctant to take anything by mouth due to her history of extreme abdominal pain but... A.Z. is now thriving in a new school. The school principal has gone out of the way to support A.Z. and her special needs. School was in contact with A.Z. s doc to better understand A.Z. s medical condition; now every teacher has been familiarized with A.Z. s condition. In the school A.Z. had previously attended, A.Z. was set apart and made to feel different. The school board is going to decide if A.Z. can continue attending the new school as it is costly to the district. The PFC Care Coordinator has been a great support for the family with the school issues. The CCSNL, along with the specialist, wrote letters on behalf of A.Z., stressing the importance of A.Z. being at that school, in an environment that supports her medical needs so that she can learn and thrive.

21 PFC Evaluation UCLA Center for Health Policy Interim evaluation completed Satisfaction surveys Family score 9.6/10, 97% would recommend CCSNL score: 9.8/10 PFC Agency score: 7.8/10 Cost evaluation - $1,677 PCPM saved

22 Change in Stress, Worry, and Confidence Levels Before and After Service Receipt (N=25) All the Time Most of the Time Difficulty sleeping Nervous/ tense Sometimes Worried Confidence Occasionally Never Baseline Follow up

23 Pre- Enrollment expense distribution After Enrollment expense distribution UCLA PFC Evaluation

24 Change in Per Client Per Month Cost Pre- to Post- Enrollment in Pediatric Palliative Care Waiver by Type of Service (N=74)

25 Overall Cost Change Pre- to Post- Enrollment in Pediatric Palliative Care Waiver January September 2011 (N=74)

26 Challenges PFC Agency Recruitment, related to Inadequate Reimbursement Agencies cannot break even with current reimbursement, PMF errors, OHC, Care plan cumbersome Long, Not electronic, CCSNL review Referring physician buy in (program much stronger where this has happened) Limited counties

27 Concurrent Care March 2010 Affordable Care Act Section 2302: Concurrent care Election of hospice shall not constitute a waiver of any rights of the child to be provided with, or to have payment made for services related to the (curative) treatment of [condition that makes child eligible for hospice]

28 Concurrent Care What It Adds and Limitations Patient under 21 can elect hospice while continuing curative treatment Six month life expectancy Hospice associations State plan coverage of curative not palliative

29 Pediatric Palliative Care Options Disease Severity Diagnosis Services Service Provider Coverage Waiver (limited counties) NL NL LOC 30 day cumulative in hospital Any (lifethreatening) Care coordination + Palliative Services by PFC Agency + Non-palliative by SCC/PCP Hospice or HHA (PFC provider) Full-Scope Medi-Cal Limited counties Concurrent Care NL <6 month life expectancy Any (lifelimiting) Palliative tx by Hospice + Non-palliative by SCC/PCP Hospice + SCC & PCP Hospice thru Medi- Cal statewide Numbered Letter CCS eligible condition Any SW/RN usually thru HHA but No expressive therapy, respite, or bereavement SCC & PCP CCS, HF Medi-Cal statewide

30 Next Steps Renewal - Currently 3 month extension Proposed changes - more expressive rx, more provider types, personal care Streamline care plan Consider additional services Pain/sx mgt by MD? Admin charge like AIDS waiver? Outreach to referring MDs

31 Next Steps (cont.) Palliative Care Telehealth Expand to up to 14 additional counties Palliative Care Special Care Centers

32 Contacts and Resources Jill Abramson, MD, MPH Partners for Children state lead, DHCS Partners for Children: Children s Hospice and Pediatric Care Coalition:

33 PFC Partners State: Jill Abramson MD MPH Galynn Thomas RN Erin Winter AGPA Sharon Lambton RN Laura Whisler PhD Non-Profit: Devon Dabbs, CHPPC

34 PFC Partners: CCSNLs CCSNLs San Diego Cynthia Fera Monterey K. Yoshiyama Santa Cruz Heather Allen Santa Clara Vickie Dunn Alameda T. Enns/ J. King Sonoma Anna Evanson Orange Vicki Munzing Los Angeles - May Randolph San Francisco- V. Young Marin V. Harter Fresno - A. Ozeta

35 Questions and Comments?

36