Fundamentals of Pediatric Palliative Care

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Fundamentals of Pediatric Palliative Care

• Californias Pediatric Palliative Care Benefit
• Leslie Adams MSW, LICSW
• Lori Butterworth
• Devon Dabbs
• Gay Walker RN, CHPC

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Medicaid Waiver
In todays web-conference we will

• 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

• Talk about the basic principles and fundamentals
  of pediatric palliative care for about 15
  minutes.
• Present the two components of Californias
  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

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(No Transcript)
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World Health Organization (1998)

• Care of childs 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

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Institute of MedicineWhen 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

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National Hospice and Palliative Care Organization
(2009)
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.
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Childrens Hospice and Palliative Care Coalition
(2007)
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.
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PPC within the context of Californias Benefit

• Concurrent with curative therapies

• Family-centered communication

• Focus on quality of life and relief of suffering

• Use of multidisciplinary team

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Area for Improvement

• Pain and Symptom Management
• 89 of children experience substantial
  suffering in the last month of life.
• gt80 report treatment for pain
• lt50 report successful treatment for pain
  
  
  (Wolfe, N.E.J.M., 342326, 2000)
• 90 of childrens pain can be alleviated
• 
  
  (Komatsu, IPPC 2008)

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Area for Improvement
Communication, Relating humanely

• 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 clinicians words and behavior
  with them forever.

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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

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Historical Model of Palliative Care
Curative treatment
Palliative treatment
Bereavement
D E A T H
Diagnosis
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Alternative Model of Palliative Care
Curative treatment
Bereavement
D E A T H
Palliative treatment
Diagnosis
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Pediatric Model of Palliative Care
DIAGNOSIS
Curative treatment
Palliative treatment
Death
Loss
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Waiver Getting in Earlier
DIAGNOSIS
Curative treatment
Palliative treatment
Loss

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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.
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When we get in earlier, there is time for

• Relationship building--Trust

• Address familys unique needs

• Relationship building between teams

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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)
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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)

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Community Based Palliative Care Coordination

• Californias Pediatric Palliative Care Benefit
• Lori Butterworth and Devon Dabbs

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Outline of session

• Californias 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

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Californias 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.

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Californias 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-l
  etter/
• All counties in California can use this numbered
  letter. Now! This is independent of the waiver.

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Californias Pediatric Palliative Care Benefit
Part 2 The Waiver

• Why wasnt 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.

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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)

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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 familys burden

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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

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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.

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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-ac
  t-of-2006/
• I dont see why we need to give up all of these
  services just because we want to get better.
• Nick Snow, the boy who flunked
  hospicetwice!

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Californias 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

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Californias 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.

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Californias 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)

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Californias 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 Sa
n Diego Santa Clara Santa Cruz Humboldt Marin
Orange Sacramento San Francisco Sonoma Fresno Los
Angeles
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Californias 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

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Californias 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

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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
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Keystone to Success
Coordination of Services
STATE PLAN/EPSDT Services See Numbered Letter
Waiver Services Care CoordinationRespite
Care Bereavement CounselingExpressive
therapiesFamily Training
Family Care Coordinator
Community Services
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Childrens 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

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Childrens Hospice and Palliative Care Coalition
Mission Statement The mission of Childrens
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 useveryone is welcome!
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Childrens Hospice and Palliative Care Coalition
We need your voice! Join useveryone is
welcome! Individual Membership
50 Organizational Membership 500 Legislative
Advocate Terri Cowger Hill, Cowger and
Associates A voice for children in Sacramento!
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California State Department of Healthcare
Services
Childrens Medical Services Branch California
Childrens Services Waiver Analysis Branch Jill
M Abramson, MD MPH FAAP, Section Chief, Program
Development Children's Medical Services,
DHCS1515 K St. , Ste 400Sacramento, CA
95814916-327-2487                 jill.abramson_at_
dhcs.ca.gov
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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
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Benefit Education Support and Training BEST in
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