California`s Pediatric Palliative Care

California’s Pediatric Palliative Care
Jill Abramson, MD, MPH
November 1, 2012
Outline
How a program can change a life
 Pediatric Palliative Care
 PFC Overview
 PFC Results
 Challenges
 PFC in the future

Case – Part 1:
‘the boss’ comes to town
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
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
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
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.


www.nicksnow.com
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
Pediatric Palliative Care
Music
therapy
Child
Life
therapy
Care coordination
Family Centered Care Plan
based on family/child desires
Counseling
Bereavement Care
Art therapy
massage
9
Pain management
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
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
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
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
Partners for Children Enrollment
Referral
CCSNL
Care
Coordinator
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.
Enrollment- Referral

Referral sources
◦
◦
◦
◦
◦
Specialist or other SCC team member
Primary care physician
Hospital team
Friends/family/other community
CCSNL case finding
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
•
•
•
•
•
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
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

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.
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
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
Pre- Enrollment expense distribution
After Enrollment expense distribution
UCLA PFC Evaluation
Change in Per Client Per Month Cost Pre- to PostEnrollment in Pediatric Palliative Care Waiver by
Type of Service (N=74)
Overall Cost Change Pre- to Post- Enrollment in
Pediatric Palliative Care Waiver January 2010September 2011 (N=74)
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
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]
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”
Pediatric Palliative
Care Options
Disease
Severity
Diagnosis
Services
Service
Provider
Coverage
Waiver
(limited
counties)
NL07-1109
NL08-1109
LOC 30 day
cumulative
in hospital
Any (life-
Care coordination +
Palliative Services
Hospice or
HHA (PFC
provider)
Full-Scope
Medi-Cal
Concurrent
Care
NL 06-1011
<6 month
life
expectancy
threatening)
by PFC Agency +
Non-palliative by
SCC/PCP
Any
(lifelimiting)
‘Palliative’ tx by
Hospice +
Non-palliative by
SCC/PCP
Limited
counties
Hospice
+
SCC & PCP
Hospice
thru MediCal
statewide
Numbered
Letter
04-0207
CCS
eligible
condition
Any
SW/RN usually
thru HHA but
No expressive
therapy, respite,
or bereavement
SCC & PCP
CCS , HF
Medi-Cal
statewide
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
Next Steps (cont.)
Palliative Care Telehealth
 Expand to up to 14 additional counties


Palliative Care Special Care Centers
Contacts and Resources
Jill Abramson, MD, MPH
Partners for Children state lead, DHCS
Jill.abramson@dhcs.ca.gov
 Partners for Children:
http://www.dhcs.ca.gov/services/ppc/Pages/default.aspx ,
ccsppc@dhcs.ca.gov
 Children’s Hospice and Pediatric Care Coalition:
www.chpcc.org

PFC Partners

State:
◦
◦
◦
◦
◦

Jill Abramson MD MPH
Galynn Thomas RN
Erin Winter AGPA
Sharon Lambton RN
Laura Whisler PhD
Non-Profit:
◦ Devon Dabbs, CHPPC
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
Questions and Comments?