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In Africa, it is often said that palliative care
is "salvage work" and not worth investing
precious time and money into. But even a
moment’s thought shows this to be
nonsense. Our role as healthcare workers is
primarily to relieve suffering and to protect
life….There can be few things more
important or valuable in life than to relieve
the suffering of a child and to help the child
live the life they have as fully as possible."
Dr. Justin Amery
Children’s Palliative Care in Africa
KEEP ME WELL:
Coming Home to Pediatric Palliative Care
DeLoache Lecture
Greenville Health System
Sarah Friebert, MD
Director, Pediatric Palliative Care
November 2014
Dr. William Redding DeLoache
1920-2009
• Graduated from Vanderbilt University &
Vanderbilt Medical School
• Veteran of US Army Medical Corps
• Founded Christie Pediatric Group in
Greenville & practiced pediatrics there for 20
years
• Director of Nurseries for Greenville Hospital
System, establishing its first Neonatal
Intensive Care Nursery
• Tremendous child advocate: Spearheaded
passage of SC legislation requiring child
restraints in automobiles
• Helped establish the Dr. William R. DeLoache
Center for Developmental Services, created
in his honor; home of 1st endowed fellowship
in DBP
• Served on boards of a number of community
organizations, including The Free Medical
Clinic, the Children's Hospital Development
Council, and Greenville's Child
• Trustee of Piedmont Healthcare Foundation
and Joe C. Davis Foundation
3
Disclosures
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Nothing, sadly
The real version:
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I have no relevant financial relationships with the
manufactures of any commercial products and/or
providers of commercial services discussed in this
activity
I do not intend to discuss an unapproved or
investigative use of commercial products or devices
The pictures of children shown herein are actual
patients, used with family permission
Other disclosures…
Children = prenatal, infants,
children, adolescents,
young adults, adults with
pediatric conditions
Also home of…Akron Children’s Hospital
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Free-standing tertiary care children’s hospital
 Established in 1890
Largest pediatric provider in NE Ohio
350 beds+
 2 campuses, 85+ locations
 2 pediatric units in adult hospitals
Only children’s hospital in area
 Large amount of community support
5 NICU/Special Care Nursery locations
Maternal/Fetal medicine practice
Regional burn center (adult + peds)
School health services in 23 school districts
Affiliated home care agency
Network of “satellite” primary care offices
Child & adolescent behavioral health services (including inpatient)
The DeLoache Lecture Description
Pediatric palliative care — comprehensive, interdisciplinary,
holistic care for children with life-threatening conditions —
is a relatively new paradigm, but it is gaining momentum as
population health management and value-based care move
into the spotlight.
Through impeccable care in multiple areas, children with
palliative care needs and their families can benefit from a
medical home approach that decreases fragmentation and
isolation while improving health outcomes and lowering
cost.
Pediatric palliative care is not about dying — it’s about
living… and living better with hope, dignity, and comfort.
7
Here’s what I really hope you hear tonight:
1.
2.
3.
4.
5.
6.
7.
Health care is changing and we must architect the change toward
wellness
Pediatric palliative care (PPC) is not just about death and dying or
pain management or cancer
PPC works better when it starts early and its availability is not
predicated on prognosis
Parents and families really do want this kind of care
It seems expensive and time-consuming up front, but like all
things preventive and wellness-centered, it ends up saving us all
time, energy and money
PPC should be part of the medical home for children with
complex medical conditions
If your family or someone you know has a child with a serious
health condition, you should demand this kind of care
SPOILER ALERT…
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Our health care system is broken
It is becoming increasingly complex
We can’t afford it any more
We pay the most and have some of the worst outcomes
worldwide
“The times they are a-changin’”
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Current world: FEE FOR SERVICE
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The more you do, the more you get paid
The more you have done to you, the more you or your
insurance company have to pay
DRGs: Prospective payment
What’s here or will be soon
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Value-based care or Pay-for-performance (P4P)
Accountable Care (ACO)
Shared savings or risk models (SSAs)
Patient-Centered Medical Homes (PCMH)
Population health
Global payment/capitation
Bundled, episode-based or episode-of-care payments
Like everything, it’s a spectrum
FFS
Capitation
Bundled
payment
Note: Many models of this type of care already exist
11
What does it all mean for patients & providers?
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Focus on quality
Not penalizing those caring for sicker patients
Incentivizing wellness and out-of-hospital care
Focus on prevention
Less duplication/inefficiency
More transparency and comparison, public reporting
Economies of scale
More individual responsibility for health & outcomes
Disadvantages too…
12
What’s broken in my world?
 Besides
the obvious….
 Children with serious illness and/or
medical complexity are an increasing
presence in our health care system BUT
 Systems and structures to serve them
are lacking
If you ask the health care team this question…
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We struggle with “doing too much” or too little
Time constraints
Lack of resources and $
Dealing with culturally diverse populations
Well communicated, coordinated care is not always present
Time constraints
Lack of resources and $
The concept of bringing the best of each of our disciplines to
the bedside is not being fully realized
We lack skills to do this well
The current system does not support or reward us to care for
complex patients and families
Time constraints
Lack of resources and $
If you ask patient and families this question…
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Lack of coordination of care among the health care
team
Lack of communication regarding options
Pain management is poor
Families are challenged on and by the decisions they
make
Inconsistent messages from the health care team
confuse us
Many health care workers are just not comfortable
with this part of care
24/7/365 care of my chronically/seriously ill child is
overwhelming
What’s broken? What are the gaps?

Children are suffering
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Families and communities are suffering
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Fragmented care
Burden of uninformed, lifelong decisions
Caregivers are suffering
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Uncontrolled pain and other symptoms
Powerless over body and decisions
Witnessing unmitigated suffering
Powerless over barriers
Health care institutions/systems are suffering
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Overburdened with high-cost care
Understaffed
A DAY IN THE LIFE
Impacts:
Quality of life, comfort
Foster care w/elderly foster parents
1 hour from hospital
Medication interactions
Multiple appointments
Jonathan
27-week premie
Severe congenital hydrocephalus/
Hypoxic Ischemic Encephalopathy
Multiple involved subspecialists:
Neurology
Neurosurgery
GI
Pediatric Surgery
Orthopedics
Pulmonology
General Pediatrician
Symptoms:
Pain (spasms? headache?)
Seizures
Sialorrhea
Constipation
Dysautonomia
Spasticity
Neuroirritability
The gaps
Children with complex health care needs often
lack a comprehensive care plan and access to
case management
 These children are at risk for
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frequent and prolonged hospitalizations
fragmented care
parental stress/burnout
unsafe care
What does the literature/evidence tell us?

Care of children with chronic, complex and/or lifethreatening conditions & their families is suboptimal
across multiple domains
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Parents and families value communication, information and
opportunities to plan
Children value attention to physical, psychosocial and spiritual
aspects of care
There are multiple unmet needs of seriously ill children and
surviving family members
How might we overcome this?
Opportunity

Pediatric Palliative Care (PPC) as a bridge:
an answer to the Triple Aim of Health Care
The “Triple Aim” of Healthcare
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IHI triple aim:
 Improve CARE
 Patient experience
 Quality and satisfaction
 Increase health of populations
 Decrease cost
Another Trifecta
 Keep me safe
 Keep me satisfied
 Keep me WELL
Framing:
 Fixing
our broken health care system, one
child at a time
 Conceptualization of PPC as a medical
home for children with complex
conditions
 Reform models
 Payment
reform – PPC IS value-based care
 Organizational
reform
Value Propositions
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Integrating interdisciplinary PPC into the PCMH for
children with chronic, complex, serious or life-threatening
conditions is:
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Innovative health care delivery for our sickest children
Building an evidence base
Replicable/scale-able
Coordinating care for children with complex, chronic conditions
to improve QOL and decrease costs
Keeping chronically ill children as healthy as possible
Keeping family members of chronically ill children as healthy as
possible…for as long as possible
You again: Pediatric Palliative Care is…
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1. A code word for hospice
2. The death squad, disguised as nice people, who come in
and give morphine to you to save money for the health
care system
3. The end of hope or “withdrawal of support”
4. Specialized medical care for children with serious
illness and their families provided by an interdisciplinary
team-based, focused on minimizing physical, spiritual,
psychosocial and practical suffering, designed to
complement disease-directed treatment from diagnosis
forward, regardless of prognosis
What is palliative care?
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Common perceptions
 Comfort care, provided by Dr. Death!
 2nd best: provided when other options
exhausted
Actual derivation: Palliatus = to cloak or conceal (as
in to cloak suffering)
Dictionary: To reduce the violence or moderate
the intensity of
 Any treatment can be classified as palliative
2011 Public Opinion Definition
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Specialized medical care for people with serious illnesses
Focused on providing patients with relief from the
symptoms, pain, and stress of a serious illness - whatever
the diagnosis
Goal is to improve quality of life for both the patient and
the family
Provided by a team of doctors, nurses, and other specialists
who work with a patient's other providers to offer an
extra layer of support
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Appropriate at any age and at any stage in a serious illness
Should be provided together with curative treatment.
www.capc.org
What is palliative care for children?

•
Organized system of holistic care for children with
chronic, complex and/or life-threatening conditions
and their families
Focus is on
•
•
•
•
symptom relief
quality of life
empowerment/mastery
intactness of self and family
Palliative Care for children…
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Seeks to prevent or relieve symptoms produced by a
life-threatening medical condition or its treatment
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Works best when provided concurrently with
disease-directed, cure-directed, life-prolonging therapy

Offers interdisciplinary help for children with such
conditions and their families to live as normally as
possible
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Provides families with timely and accurate
information and support in decision making
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Provides support for caregivers
Definition at Akron Children’s
 Anticipatory
guidance for
children with medical
complexity
 Medical home (or garage?) for
children with complex, chronic
and/or life-threatening
conditions
Anticipatory Guidance
• PREVENTION
• Like immunization against crisis-driven,
desperate, expensive decision making
• Providing partnered/shared decision making
for families facing life-threatening conditions
• Families AND providers make better, more
informed decisions
– Decreases decisional regret
• Lessens collateral damage
Physical/Medical Elements of PPC
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Pain management
Management of other distressing symptoms
infection
cough
secretions
anxiety
nausea
diarrhea
anemia
increased ICP
agitation
“storming”
dyspnea
fatigue
edema
insomnia
vomiting
bleeding
pruritis
hypotonia
irritability
dry mouth
respiratory distress
weakness
depression
sleep disorders
poor appetite/feeding
constipation
seizures
rigidity/spasms
behavior changes
dysuria/incontinence
Non-physical Elements of PPC
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Attention to:
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the whole person
the person within the family and community
structure
psychological and spiritual domains
achievement of goals
developmental milestones
social and practical concerns
bereavement issues
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including anticipatory and post-death
loss of expected life
What Palliative Care is NOT
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Equivalent to hospice
Giving up cure-directed treatment
Giving up altogether
DNR
Taking away hope
Only for children with cancer
Only for people who are going to die soon
Only for people who are at home
The death squad, here to give morphine & make death
happen faster
Palliative care vs. hospice
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PC is outgrowth of the hospice movement
Palliative care eases suffering in many domains
Palliative care is umbrella that includes
hospice
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All hospice is palliative care, but not all palliative
care is hospice
Hospice is tail end, time-limited part of PC
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Financial distinction
Models of Local/Regional PPC
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Children’s hospitals
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58-74% have palliative care programs
Pediatric hospitals within hospitals
Hospice agencies
Community-based home health
Primary care/medical home models
Free-standing pediatric hospice/palliative care/respite
facilities
Long-term care facilities
35
Trend: Early Integration of PPC
• Should not be “either/or” choice for family or
transition to second best
– Allows utilization of full scope of supports
– Enables development of rapport
– Family perceives care teams as one entity
• Goal is integration with primary team
– Keeping PMD as quarterback or center
• Disease modifying and palliative care strategies
often synergistic
– Chemo/radiation may relieve symptoms
– Better sleep/nutrition/pain control affects tolerance of
disease-modifying therapy
– Good palliative care may allow curative therapy to occur
Who are the villagers providing PPC?
Doctors (PC cert)
Nurses/NPs
Social workers
Bereavement Coord
Expressive therapists
Psychologists
Home care staff
Child Life
PCP/subspecialists
Financial mgmt staff
Education/School staff
Community agencies
Pharmacists
Volunteers
Case managers
Secretaries/office mgrs
Spiritual care providers
Dietitians
PT/OT/Speech therapists
Palliative Care Fellows
Fetal Treatment personnel
Development/PR specialists
Massotherapists/Acupuncturists
Patients & Parents themselves
Populations we serve
• Sickest of the sick
– Children who may be dying or die soon
– Children who may live a long time with severe, debilitating chronic
illness
– Children who may ultimately be cured but for whom the journey
will be difficult
• Chronic health care conditions such as DD with or without
cerebral palsy, CKD, CHD, technology dependency, genetic
or birth defects, neurologic disorders, high-risk cancer, or
chronic pain
• Limited mobility
• Require special health care support and/or equipment due
to paralysis or chronic disease
• Any child whose life trajectory is altered by underlying
illness or injury (congenital or acquired)
The short answer to the question:
Our Palette Mission
To integrate legendary and indispensable
pediatric palliative care into the journey for
all children facing serious illness and their
families
 To provide leadership in education,
research, and advocacy initiatives in
pediatric palliative care locally, regionally,
nationally and internationally
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PPC at ACH
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Academic Division of Pediatrics since 2002
Any age with pediatric diagnosis or specialist
Any chronic, complex or life-threatening condition
Hospital-based team available 24/7/365
 Inpatient consultation
 Inpatient primary medical service (until age 35)
 Outpatient services designed to fit family
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Collaboration with PCP, subspecialists
Transition to home with comfort care
Coordination with local/regional home care and hospice agencies
Home visits
Primary medical management when appropriate
Clinical Services: Local
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24/7/365 availability
Prenatal consultation and birth planning
Service delivered where patient is (not a “unit”)
Chronic pain and PCA management
Integration with complex care pediatric practice,
technology-dependent and specialty clinics
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Home visits
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Supplemental complementary services (allied health)
Eyes and ears in the home
Active participation with hospital rounds/committees
Inpatient and “home visit” coverage for local long-term
care facility for children with disabilities
A short insider’s view
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https://www.youtube.com/watch?v=sikOe1RR3KA
www.neomed.edu/educationalmedia
Tyler:
Juvenile Pilocytic Astrocytoma
Pseudo-obstruction
Panhypopituitarism, esp DI
Severe medical fragility
VP shunt
Symptoms:
Pain (headache, gut)
Severe, chronic constipation
Neuroirritability/frustration
Dysautonomia
Frequent infections
Anxiety/agitation
Impacts:
2 working parents
Constant hospitalization
Impaired communication
Life revolved around stool
What do we do for families?
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LISTEN
Help make good decisions
Help relieve symptoms
Improve quality of life, and quantity too!
Help create memories
Support with siblings, other family
Bereavement help
Financial help
Care coordination – “a life-line”
What do we do besides medical care?
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Home visits
24/7 availability
Prenatal consultation
Case management
 “Care navigator” – go-to person
 Liaison with other agencies, care providers
Financial assistance
 Gift cards, gas cards, phones, transportation, funeral expenses, mortgages,
utilities, unplanned expenses, respite, wishes
Spiritual support
School interventions/IEPs
Support groups, including siblings and grandparents
Individual counseling
Memory making
Bereavement care as long as desired
Education everywhere!
Advocacy – local, state, national
Haslinger Center Statistics: Since 2002
2050+ patients/families enrolled
 ALOS 1017 days
 60-65% Medicaid/Medicaid HMO
 47/88 Ohio counties, plus other states
 Top 4 reasons for referral:
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Family support
Care coordination
Pain/Symptom management
EOL planning
Framing:
 Fixing
our broken health care system, one
child at a time
 Conceptualization of PPC as a medical
home for children with complex
conditions
 Reform models
 Payment
reform – PPC IS value-based care
 Organizational
reform
Medical Home History
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1960s: AAP describes Medical Home as a central
repository of pediatric records, especially for CYSHN
1970s: Policy statements endorse the concept of a
medical home for every child to reduce fragmentation of
care
1980s:
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MH concept shifts to community-based primary care,
addressing health, education, family, and social issues of the
whole child
MH concept endorsed as state-wide policy in Hawaii
Medical Home History
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1990s: First AAP policy statement defining the Medical Home.
AAP working with MCHB establishes the MH Program for
CYSHCN (94) and National Center for MH Initiatives for
CYSHCN
2001: The Medical Home Improvement Kit published by
Crotched Mountain Foundation. WC Cooley MD
2002: AAP updates MH Policy, keeping the original attributes,
and providing a pathway for MH transformation
2007: AAP joins with AAFP, ACP, and AOA on Patient Centered
Medical Home Joint Principles
2007-10: MH takes off. Demonstration projects in every state
with support from government, academia, payers, and
philanthropic organizations
Joint Principles of the
Patient-Centered Medical Home
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American Academy of Pediatrics

American Academy of Family Physicians
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American College of Physicians

American Osteopathic Association
Medical Home Definition
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Primary care
Family-centered partnership
Community-based, interdisciplinary, teambased approach to care
Care that is: accessible, family-centered,
coordinated, compassionate, continuous, and
culturally effective.
Preventive, acute and chronic care
Quality improvement
Medical Home Model
Patient-Centered Medical Home

Payment goes in to the system to cover the cost of
coordination of care without specifying targets or
outcomes to justify the cost

Reduces utilization and prevents higher cost episodes

Does not reduce costs within hospitalizations

“Measuring Medical Homes: Tools to Evaluate the Pediatric
Patient- and Family-Centered Medical Home”

Malouin RA & Merten SL
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National Center for Medical Home Implementation - AAP
Perrin, J. M. et al. Arch Pediatr Adolesc Med 2007;161:933-936.
The Cheers Definition

Medical Home: A place where everyone
knows your name.
Peter Cooper White, MD

PPC: Everyone remembers your
name…forever… and the names of your
siblings and pets and grandparents and…
Zeroing in: Scope of the Issue

Pediatrics increasingly involves chronic disease
management
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We have less time to see/care for them
Children with Complex Chronic Conditions:
Utilizing an increasing % of medical resources
 6% of pediatric patients spend 40% of the Medicaid
budget (~$30 billion)*
 Accrue 10X annual costs of “other” kids on
Medicaid
 Medicaid is largest payer (2/3) because their care
outstrips coverage from commercial plans
 Becoming more complicated
 Death rate far higher than that of healthy children

*Children’s Hospital Association
National Statistics

50,000 children die annually in the US
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1 is too many, but 2.5 million adults die/year
Slightly more than half are infants
Of children who die nationally, only 10-20% are
served by hospice and palliative care programs
Higher math: It’s not about dying
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Definitional confusion
Children with special health care needs (CSHCN) comprise
12.8 % of all children under age 18 in the US
 Half a million young adults will reach age 18 with a
special health care need every year
Estimated 1+ million children living with chronic, life-limiting
or life-threatening conditions in the US
 Increasing # of previously fatal illnesses/conditions now
chronic
 Death rate decreasing slightly overall + population
increasing steadily = more patients
Complex Chronic Conditions
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Significant chronic conditions in two or more body
systems and/or conditions that have shortened life
expectancies
Top of the Pyramid
 Tier 1 – Healthy/well children
 Wellness-based care
 Tier 2 – Non- or episodic-chronic conditions
 Severity, not complexity
 Case management
 Tier 3 – Coordinated, “hub” care
Local Statistics
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In 2010 at ACH
 15% of patients
 1-2% of children nationwide
 35% of hospital days
 45% of charges
% change from 2004-2010
 65% growth in # of patients
 100% growth in # of patient days
Complex Care HCIA Initiative
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Focus on medically complex conditions/ Children with special
health care needs
Initial focus on patients with a neurological diagnosis and
enteral feeds
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Literature and expert-driven consensus
Local data analysis
Now includes children with tracheostomies
Goal: improve quality of life and health system satisfaction for
complex patients
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Reducing acute care utilization, therefore cost
Developing care coordination plans
Increasing healthy weight status of complex patients
62
What do families of children with CCC want?

Seamless, non-fragmented care coordination
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Cure-directed AND palliative therapies concurrently
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24/7/365 access
Health care providers familiar with their child
Streamlined communication
Leaving no stone unturned or treating treatable things
Informed decision making based on honest, understandable
information
Excellent symptom management: no pain
Respite care
Care available wherever most comfortable
When a child will not survive…
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Maintain hope until the end
Grief/bereavement support for as long as desired
Specific Measures
•
Process measures
•
•
•
•
•
•
Improved parent and PCP-reported access to and
satisfaction with coordination and needed care
Increased efficiency of receiving needed services
Improved health status
Decreased emergency department visits
Decreased hospital LOS
•
•
Transparent and replicable
# of hospital admissions measured but not focus
Improved family coping and resiliency
Our overall goal
•
Partner with PCPs to provide a comprehensive
medical home for children with complex needs by:
1. Providing case management which is often time
consuming, inefficient and/or expensive
2. Creating a care plan with the family and PCP
for the child when well or ill, at home or in the
hospital
3. Enhancing access to other supportive services
to enhance family-centered, goal-driven care
4. Providing anticipatory guidance PRIOR TO
engagement with medical technology
CARE TEAM
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Core team
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PCPs and involved specialists
Case Managers
Social Workers
Dietitian
Physician leadership
24/7 phone access for families and primary care
providers for immediate questions
Support team

Pediatric Palliative Care Team – Physicians, nurse
practitioners, fellows, spiritual care staff, child life
specialists, rehab therapists, expressive therapists,
massage therapy
Complex Care Methods
 Care
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coordination
Home visits
Follow-up phone calls after hospitalizations and ER visits
Medication reconciliation
Communication with PCP
Comprehensive care plan development with family
Family resource bundle
Personal health record
 Nutritional
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screening and evaluation
Annual physical assessment and as needed
Annual formula evaluation and as needed
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Framing:
 Fixing
our broken health care system, one
child at a time
 Conceptualization of PPC as a medical
home for children with complex
conditions
 Reform models
 Payment
reform – PPC IS value-based care
 Organizational
reform
Integrated Health System
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Patients and Families
Primary Care Physicians
Specialists and subspecialists
Hospitals and Healthcare
Facilities
Public Health
Community
Doesn’t this sound like Palliative Care to you?
Pediatric ACO Mandatory Elements for performance

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Education
Social
Mental Health
Physical Health
Transparency
Community Leadership
Consumer Trust
Doesn’t this sound like Palliative Care to you?
Value Propositions

Integrating interdisciplinary PPC into the PCMH for
children with chronic, complex, serious or lifethreatening conditions is:


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
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Innovative health care delivery for our sickest children
Building an evidence base
Replicable/scale-able
Coordinating care for children with complex, chronic
conditions to improve QOL and decrease costs
Keeping chronically ill children as healthy as possible
Keeping family members of chronically ill children as
healthy as possible…for as long as possible
Outcomes of quality PPC
•
Helps the institution meet external accreditation or
performance standards
•
•
•
Increases patient and family satisfaction
•
•
•
•
Compassion fatigue, moral distress, retention
ACO “continuum of care” ingredient
Role in HRO management
•
•
With PPC but also with hospital, other services
Increases downstream referrals
Increases staff satisfaction
•
•
JCAHO
Magnet
Help meet pay-for-performance or quality goals
Improves safety
Impact of Wide-Spread PPC

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Improved access to high-quality care
Decreased fragmentation
Improved SAFETY
Lower cost
More proactive, preventive care
Improved overall health


Patient, family, community
Better family outcomes
73
What it’s really all about

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COMMUNICATION
COMPASSION and HUMILITY
COORDINATION
ACCESS
QUALITY
EASING SUFFERING
MEETING A FAMILY WHERE THEY ARE AND
WALKING A JOURNEY
MEETING OTHER CAREGIVERS WHERE THEY
ARE AND WALKING A JOURNEY
BEING ABLE TO GET UP IN THE MORNING AND
DO IT ALL OVER AGAIN
Final thoughts

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Obligation to heal vs. cure
Conceptualizing high-quality PPC as medical homebased care for children with CCC makes SENSE!
Whatever the outcome, children are much more
able to face illness with dignity and energy if they
receive compassionate, holistic care that manages
symptoms and addresses their non-physical needs
Children and families who receive palliative care
LIVE BETTER and at least as long, if not longer!
sfriebert@chmca.org
“Hope is a
verb with its
shirtsleeves
rolled up”
David Orr