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Not Just for Dying Anymore:. Integrative Pediatric Palliative Care for Children with Complex Chronic Conditions. PPC Timeline. 70’s Ida Martinson – Home Care for Dying Children Limited literature outside of Oncology 80’s to mid 90’s Small body of Pediatric Hospice Literature

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Not just for dying anymore

Not Just for Dying Anymore:

Integrative Pediatric Palliative Care for Children with Complex Chronic Conditions

Ppc timeline
PPC Timeline

  • 70’s

    • Ida Martinson – Home Care for Dying Children

    • Limited literature outside of Oncology

  • 80’s to mid 90’s

    • Small body of Pediatric Hospice Literature

    • Children’s Hospice International

  • 1998 -2013

    • Significant increase in literature/Seminal Articles

    • Position Statements, Program Development

    • Educational Curriculum, Clinical Resources

Expansion of ppc literature
Expansion of PPC Literature

Number of articles

PubMed Search Term

Progression of the science of ppc
Progression of the Science of PPC










Ethics, Futility


Program Dev




Told story

Identified need

HIV, NICU, Cancer, CF

Expanded population




EOL Care

What does this mean
What does this mean?

  • PPC is establishing a body of knowledge

    • Distinguishes it as a distinct discipline

    • Demonstrates ongoing commitment to the field

    • Expanded populations of children in PPC

    • Allows for refinement and future development of knowledge

Early vernacular
Early Vernacular

  • Hospice

  • End of Life Care

  • Palliative (Supportive) Care

  • Irreversible, Progressive, Terminal

  • Curative, Life-Prolonging, Comfort

Dichotomous care process
Dichotomous Care Process

Mutually Exclusive

  • Family

    • Forced Choices

    • No best option

    • Abandonment

    • Hope


‘The Dying Point’

End of Life Care

Docherty et al Ped Nurs 2007

  • Health Care Providers

    • Prognostic Uncertainty

    • Family resistance

    • Challenge of changing course of care

    • Conflict around goals of care

    • Avoidance of emotionally charged situations

    • Relinquishing care to another team

    • Hope

Complex chronic conditions of childhood
Complex Chronic Conditions of Childhood

  • Medical condition reasonably expected to last at least 12 mos

  • Involves several organ systems or one organ system severely enough to require specialty pediatric care and some period of hospitalization in a tertiary care center

    Feudtner, Digiuseppe, Neff 2003. BCM Medicine

Characteristics of death from cccc
Characteristics of Death from CCCC

  • Feudtner 2005 Washington State

    • 25% due to CCC

    • Rate of hospitalization increases as death draws near

    • Stable to increased deaths in infancy and increased deaths in adolescents and early adulthood

Characteristics of death from ccc
Characteristics of Death from CCC

  • Brandon et al J Palliative Med, 2007

    • 2000 HCUP-KIDS database review

    • 56% to 61% occur in Hospital, 86% in ICU

    • CCCC more likely to die in Children’s Hospitals with longer LOS (10 days)

      and costs of ~$100,000

    • General Hospital deaths primarily non CCC, shorter LOS (50% on day of admit) at ~$34,000

    • Most prevalent CCC categories: <12 mos cardiovascular, respiratory, congenital/genetic 10-18 yrs Neuromuscular, malignancies

Development of hospital ppc
Development of Hospital PPC

  • Consult Service

    • Boston

  • Education Service

    • John’s Hopkins

  • Psychosocial Community Support System

    • Footprints

  • Home Care/Hospice

    • Buffalo

Dichotomous care process1
Dichotomous Care Process


Palliative Care

End Of Life



Attempt to bridge gap between ‘curative’ and ‘palliative’ care

Initially Oncology based

Effort to ‘move upstream’ in disease trajectory

Unclear Role

Large population of children without active PCP leading care

Limited workable community programs

Act for children
ACT for Children

ACT admissions, deaths, monthly census 11/99-4/01

Act ppc program nov 99 dec 12
ACT PPC Program Nov 99 – Dec 12

  • Patient Consults – ~700

    • Primary CNS Neuro – 34%

    • Oncology- 25%

    • Non-Neuro Genetic – 20%

    • Other – 10%

    • Neuromuscular – 7%

    • Congenital Heart – 5%

    • Pulmonary – 5%

    • Pain Management – 4%

  • Children under 3 comprised 50% of case load

Identifying the Population Served

4523 (1130 from CCC)

2011 TDSHS Vital Statistics

Texas Estimates




Milligan & Burnside, 2001

Bramlett MD, Read D, Bethell C, Blumberg, Matern Child Health J, 2008


with Complex

Chronic Conditions

1,251,391 – 1,390,435

Bethell, Read, Blumberg Newacheck. Matern Child Health J. 2008

Children with

Special Health

Care Needs


2011 Texas Child Census

Population of Children Under 18

CCC Health Care Needs

Healthy Child



Medical Home


Risk screening

Subspecialty care

Community/Ed Services


Medical Home +

Multiple Subspecialty Svcs

Care Coordination/Social Support

Medical Decision Making

Pain/Symptom Management

Childhood CCC

Medical Home + Multiple Subspecialty Svcs

Care Coordination

Medical Decision Making/Advanced Directives

Pain/Symptom Management, Spiritual

Support , Grief and Bereavement Care

Dying Child

Impact of ccc s on family
Impact of CCC’s on Family

  • Social Isolation

  • Financial burden

  • Family interpersonal stress

  • Parenting PLUS/Public Parenting

    • A journey through time

Unmet needs
Unmet Needs

  • Informational Needs

  • Access to subspecialty and community services

  • Care Coordination

  • Social Support

State of the system
State of the System

  • Technological Imperative

    • The push for newer and better

    • Medical Goal vs. Life Goals

    • Societal Responsibility for Outcomes

  • Fragmentation

    • Multiple Sub-specialists

    • Niche Services/Sub-sub-sub contracting

      • Home Health

      • DME

      • Pharmacy

      • Infusion Therapy

      • Rehab Therapies


  • Who’s in charge???

    • Pediatrician

    • Sub-specialist

    • Parent

  • Communication child/family

    • Diagnosis

    • Prognosis

    • Anticipatory Guidance

    • Care Planning

Healthcare utilization cost
Healthcare Utilization Cost

  • Medically Complex Children

  • Cohen 2012 - 15,771 children in Ontario over 2 years

    • Median of 13 outpatient physicians, 6 distinct subspecialists

    • 36% received home care services

    • 30 day re admits - 12.6% single CCC to 23.7% multiple CCC with TA Rehospitalization Home Care Physician Services

    • Total 2 yr cost - ~ $850, 000, 000 (Canadian); 32% of Pedi HC spending

  • Berry 2011 – 69,294 children admitted to 37 US hospitals 2003-08

    • 2.9% of children – 4 or more readmits

    • Accounted for 19% of readmissions and 23% total inpt charges

    • $3.4 billion

    • CCC higher readmissions, used TA; had public insurance; non-Hispanic Black; admitted for problem in same organ system

  • Ppc and health care
    PPC and Health Care

    • Gans 2012 California

      • Partners for Children

        • MC Waiver program – Hospice and Curative Services

        • 32% reduction in Hospital days; 35% reduction in cost

        • 11% reduction PMPM spending

        • 18 mo savings of ~ 1 million

        • Cost shift to outpatient medical visits and pharmaceutical costs

        • Improved Family QOL indicators

          • Improved sleep and confidence; decreased stress, worry

    Changing course
    Changing Course

    There is nothing more difficult to plan, more doubtful of success, nor more dangerous to manage than the creation of a new system. For the initiator has the enmity of all who would profit by the preservation of the old system and merely lukewarm defenders in those who would gain by the new one. – Machiavelli – 1513

    Health care 2010
    Health Care 2010

    • New Buzzwords

      • Quality

      • Outcomes

      • Cost Effective

    Ppc the new vernacular
    PPC - The New Vernacular

    • Family Centered Care, Medical Home

    • Restorative, Supportive

    • Care Coordination

    • Quality of Life

    • Transdisciplinary

    • Continuous through trajectory

    Concurrent care
    Concurrent Care

    • Section 2302 of the Patient Protection and Affordable Care Act of 2010 (P.L. 111-148)

      A voluntary election to have payment made for hospice care for a child (as defined by the State) shall not constitute a waiver of any rights of the child to be provided with, or to have payment made under this title for, services that are related to the treatment of the child’s condition for which a diagnosis of terminal illness has been made.

    Concurrent care1
    Concurrent Care

    • What it Does:

      • removes barrier to enrollment of children on hospice services

      • CMS believes that the new provisions are “…vitally important for children and their families seeking a blended package of curative/life prolonging and palliative services”

    NHPCO Implementation Toolkit pg 4

    Concurrent care2
    Concurrent Care

    • What it Doesn’t Do:

      • Change the 6 month Hospice certification of terminal illness requirement

      • Provide benefits outside of those outlined in the State Plan Amendment

      • Change the required service components of Hospice

        • If it provides pain and symptom relief of a terminal condition, then it should be included in Hospice Benefit

    Integrative pediatric palliative care
    Integrative Pediatric Palliative Care

    Family Centered Care

    Lived Experience

    HC Goals

    Impact on Child & Family


    Shared Decision Making

    Care Coordination

    Maximizing Potential

    Maximizing Comfort




    Ethical Decision Making

    EOL Care

    Chronic Care Management

    Adult Care

    Care of children with ccc s
    Care of Children with CCC’s

    • Flexibility to serve wide range of CCC’s

      • Perinatal care to transition from pediatric to adult services, end-of-life care, bereavement

    • Specific to sub-population needs

      • Malignancy vs Pulmonary vs Neurodegenerative vs N/PICU

    • Collaborative relationships, Integrated Care

      • Health Care Team

      • Community Health Care Providers

      • Child and Family

    • Creates forum for Shared Decision Making, Care Planning

      • Ethical Decision Making process

      • Individualized to child/family

    Child and family experience
    Child and Family Experience

    • Understanding their story

    • Impact of Illness

    • Relationship with Health Care Professionals

      • Communication (parent, child, siblings)

      • Respect vs Distrust

      • Earned Intimacy

    • Values, Beliefs, Hopes


    • Guiding Ethical Principles

      • Veracity, Autonomy

    • Parent preferences

    • Barriers

    • Parent-HCP

    • HCP-HCP

    Care for children with ccc s
    Care for Children with CCC’s

    • Moves through illness trajectory with child/family

    • Moves across care settings

    • Facilitates Shared Decision Making

    • Transdisciplinary care coordination

    • Highly dependent on communication

    • Dynamic, ongoing, pre-emptive, anticipatory

    • Identify and alleviate sources of preventable suffering/distress and improve Quality of Life

    Shift in location of care
    Shift in Location of Care

    • Shift from Hospital to Community

      • CCC with TA - >$100,000 month

      • Higher care demand on family

      • Substantial Unmet Needs

        • Access to needed community base care

          • Nursing

          • Therapists

        • Competent community caregivers

        • Disparity in reimbursement

          • Medicaid vs Private Ins

    Viable models of care
    Viable Models of Care

    • Medical Home

    • Pediatric Palliative/Supportive Care

    • Home Care/Hospice

    • Case Management


    • Integration across sites of care

    • Establishing lines of communication, collaboration

    • Cost effectiveness

    The medical home
    The Medical Home

    • Key Components (AAP)

      • Accessible

      • Continuous

      • Comprehensive

      • Family Centered

      • Coordinated

      • Compassionate

      • Culturally Effective

    Palliative care medical home
    Palliative Care Medical Home

    • Promotes quality of life through enhanced communication and medical decision making based on individual child and family values.

      • Shared decision making

      • Focused on illness experience, family values

      • Establishes understanding of prognosis, goals of care

      • Attention to sources of preventable suffering

      • Multifaceted, Interdisciplinary


    • Community based program that uses an interdisciplinary team of health care professionals to provide comprehensive palliative care for terminally ill patients and their families

    • Significant limitations for pediatric population

    Barriers to palliative care
    Barriers to Palliative Care

    • Still linked to end-of-life care, leads to late referral/intervention

    • Limited number of competent providers

    • Fragmentation, limitations on necessary supportive services

    Home care
    Home Care

    • Intermittent acute care nursing visits

    • Private duty nursing care

      • CCP

      • MDCP

      • Consolidated Waiver Program

      • Private Insurance

    • Home Based Therapies

    • Infusion services, radiology, swallow studies, DME

    Barriers to home care
    Barriers to Home Care

    • Large waiting lists for waiver programs

    • Variations in Private Insurance benefits

    • Nursing shortage

    • Disparity between private and public insurance coverage/programs

    • Social services reimbursement

    Case management
    Case Management

    • Case Management

      • Cost Containment

      • Utilization Review/Care Authorization

      • Referral Resource

      • Discharge Planning

    • Not necessarily tied into medical plan of care

    Care coordination
    Care Coordination

    • Hallmark of Pediatric Palliative Care and Medical Home Model

    • Care coordination is associated with reducing ER and hospitalizations, lowering cost and improving family satisfaction

    • Challenges


    • Interprofessional

      • Transdisciplinary care

      • ‘Many hands make light work’

      • Challenge in moving from hierarchical HCT structure to collaborative structure

    • Interagency

      • Hospital

      • Outpatient settings

      • Community Agencies

      • Local emergency and law enforcement

      • Benevolent organizations

    Case study
    Case Study

    • Child with rare metabolic disorder – fatal in first year of life

      • Mom 14, pregnancy result of consanguineous relationship with older cousin, placed in foster care with child

      • Involved agencies/individuals

        • CPS (mother and child)

        • Court

        • Foster Care Placement Agency

        • Foster family, Biological family

        • Home Care

        • Hospice

      • Coordination/Collaboration

        • Collaborative care planning meeting

        • Established roles and requirements for each entity

        • Communication notebook – symptom management changes

      • Unanticipated – on-call Admin for Foster agency; notification of military police

    Integrative pediatric palliative care1
    Integrative Pediatric Palliative Care

    • A process of care for children and families living with complex medical conditions that

      • Provides cost effective state of the art medical care

      • Focuses on quality of life within illness process

      • Is comprehensive, coordinated, individualized

      • Anticipatory

      • Care based on child/family preferences and values

      • Maximizing child and family resources, strengths

      • Focused on quality of life, child/family goals

      • Creates sense of success for child/family/parent and HCT