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Dr. Justin Amery
Children’s Palliative Care in Africa
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."
KEEP ME WELL:Coming Home to Pediatric Palliative Care
DeLoache LectureGreenville Health System
Sarah Friebert, MDDirector, Pediatric Palliative Care
November 2014
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• 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
Dr. William Redding DeLoache1920-2009
Disclosures
Nothing, sadly The real version:
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
Children = prenatal, infants, children, adolescents,
young adults, adults with pediatric conditions
Other disclosures…
Also home of…Akron Children’s Hospital 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.
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1. Health care is changing and we must architect the change toward wellness
2. Pediatric palliative care (PPC) is not just about death and dying or pain management or cancer
3. PPC works better when it starts early and its availability is not predicated on prognosis
4. Parents and families really do want this kind of care5. 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
6. PPC should be part of the medical home for children with complex medical conditions
7. If your family or someone you know has a child with a serious health condition, you should demand this kind of care
Here’s what I really hope you hear tonight:
SPOILER ALERT…
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’” Current world: FEE FOR SERVICE
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 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
Bundled paymen
t
Capitation
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Note: Many models of this type of care already exist
What does it all mean for patients & providers?
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…
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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… 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…
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 Uncontrolled pain and other symptoms Powerless over body and decisions
Families and communities are suffering Fragmented care Burden of uninformed, lifelong decisions
Caregivers are suffering Witnessing unmitigated suffering Powerless over barriers
Health care institutions/systems are suffering Overburdened with high-cost care Understaffed
Jonathan27-week premieSevere congenital hydrocephalus/Hypoxic Ischemic EncephalopathyMultiple involved subspecialists:
NeurologyNeurosurgeryGIPediatric SurgeryOrthopedicsPulmonologyGeneral Pediatrician
Symptoms:Pain (spasms? headache?)SeizuresSialorrheaConstipationDysautonomiaSpasticityNeuroirritability
Impacts:Quality of life, comfortFoster care w/elderly foster parents1 hour from hospitalMedication interactionsMultiple appointments
A DAY IN THE LIFE
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 frequent and prolonged hospitalizations fragmented care parental stress/burnout unsafe care
Care of children with chronic, complex and/or life-threatening conditions & their families is suboptimal across multiple domains 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
What does the literature/evidence tell us?
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
IHI triple aim: Improve CARE
Patient experienceQuality 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 modelsPayment reform – PPC IS value-based care
Organizational reform
Value Propositions
Integrating interdisciplinary PPC into the PCMH for children with chronic, complex, serious or life-threatening conditions is: 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…
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?
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
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
Appropriate at any age and at any stage in a serious illness
Should be provided together with curative treatment.
2011 Public Opinion Definition
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… Seeks to prevent or relieve symptoms produced by
a life-threatening medical condition or its treatment
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
Provides families with timely and accurate information and support in decision making
Provides support for caregivers
Anticipatory guidance for children with medical complexity
Medical home (or garage?) for children with complex, chronic and/or life-threatening conditions
Definition at Akron Children’s
• 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
Anticipatory Guidance
Pain management Management of other distressing symptoms
infection dyspnea respiratory distress cough fatigue weaknesssecretions edema depressionanxiety insomnia sleep disorders nausea vomiting poor appetite/feeding diarrhea bleeding constipationanemia pruritis seizuresincreased ICP hypotonia rigidity/spasmsagitation irritability behavior changes“storming” dry mouth dysuria/incontinence
Physical/Medical Elements of PPC
Non-physical Elements of PPC Attention to:
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
including anticipatory and post-death loss of expected life
What Palliative Care is NOT
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
PC is outgrowth of the hospice movement
Palliative care eases suffering in many domains
Palliative care is umbrella that includes hospice All hospice is palliative care, but not all
palliative care is hospice Hospice is tail end, time-limited part
of PC Financial distinction
Palliative care vs. hospice
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Models of Local/Regional PPC
Children’s hospitals 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
• 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
Trend: Early Integration of PPC
Who are the villagers providing PPC?Doctors (PC cert) PharmacistsNurses/NPs VolunteersSocial workers Case managersBereavement Coord Secretaries/office mgrsExpressive therapists Spiritual care providersPsychologists DietitiansHome care staff PT/OT/Speech therapistsChild Life Palliative Care FellowsPCP/subspecialists Fetal Treatment personnelFinancial mgmt staff Development/PR specialistsEducation/School staff Massotherapists/AcupuncturistsCommunity agencies 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
PPC at ACH
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
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 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 Supplemental complementary services (allied health)
Home visits 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
https://www.youtube.com/watch?v=sikOe1RR3KA
www.neomed.edu/educationalmedia
Tyler:Juvenile Pilocytic AstrocytomaPseudo-obstructionPanhypopituitarism, esp DISevere medical fragilityVP shunt
Symptoms:Pain (headache, gut)Severe, chronic constipationNeuroirritability/frustrationDysautonomiaFrequent infectionsAnxiety/agitation
Impacts:2 working parentsConstant hospitalizationImpaired communicationLife revolved around stool
What do we do for families?
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? 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
2050+ patients/families enrolled ALOS 1017 days 60-65% Medicaid/Medicaid HMO 47/88 Ohio counties, plus other states Top 4 reasons for referral:
Family support Care coordination Pain/Symptom management EOL planning
Haslinger Center Statistics: Since 2002
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 modelsPayment reform – PPC IS value-based care
Organizational reform
Medical Home History
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: 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 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
American Academy of Pediatrics
American Academy of Family Physicians
American College of Physicians
American Osteopathic Association
Medical Home Definition
Primary care Family-centered partnership Community-based, interdisciplinary,
team-based 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
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.
PPC: Everyone remembers your name…forever… and the names of your siblings and pets and grandparents and…
Peter Cooper White, MD
Zeroing in: Scope of the Issue
Pediatrics increasingly involves chronic disease management 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
50,000 children die annually in the US 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
National Statistics
Higher math: It’s not about dying
Definitional confusionChildren 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
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 complexityCase management
Tier 3 – Coordinated, “hub” care
Local Statistics
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
Focus on medically complex conditions/ Children with special health care needs
Initial focus on patients with a neurological diagnosis and enteral feeds 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 Reducing acute care utilization, therefore cost Developing care coordination plans Increasing healthy weight status of complex patients
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Seamless, non-fragmented care coordination 24/7/365 access Health care providers familiar with their child Streamlined communication
Cure-directed AND palliative therapies concurrently 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…
Maintain hope until the end Grief/bereavement support for as long as desired
What do families of children with CCC want?
Specific Measures
• Process measures• Transparent and replicable
• 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
• # 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
Core team 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 MethodsCare 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 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 modelsPayment reform – PPC IS value-based care
Organizational reform
Integrated Health System
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
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 life-threatening conditions is: 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• JCAHO• Magnet
• Increases patient and family satisfaction• With PPC but also with hospital, other services• Increases downstream referrals
• Increases staff satisfaction• Compassion fatigue, moral distress, retention
• ACO “continuum of care” ingredient• Role in HRO management
• Help meet pay-for-performance or quality goals• Improves safety
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Impact of Wide-Spread PPC
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
What it’s really all about
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
Obligation to heal vs. cure Conceptualizing high-quality PPC as
medical home-based 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!
