Dr. Justin Amery - PowerPoint Presentation

Slide1

Dr. Justin AmeryChildren’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."Slide2

KEEP ME WELL:

Coming Home to Pediatric Palliative Care

DeLoache

Lecture

Greenville Health System

Sarah Friebert, MD

Director, Pediatric Palliative Care

November 2014Slide3

3

Graduated

from Vanderbilt

University & Vanderbilt Medical School

Veteran of US

Army Medical

Corps

Founded Christie Pediatric Group in Greenville & practiced pediatrics there for 20 yearsDirector of Nurseries for Greenville Hospital System, establishing its first Neonatal Intensive Care NurseryTremendous child advocate: Spearheaded passage of SC legislation requiring child restraints in automobilesHelped establish the Dr. William R. DeLoache Center for Developmental Services, created in his honor; home of 1st endowed fellowship in DBPServed on boards of a number of community organizations, including The Free Medical Clinic, the Children's Hospital Development Council, and Greenville's ChildTrustee of Piedmont Healthcare Foundation and Joe C. Davis Foundation

Dr. William Redding

DeLoache

1920-2009Slide4

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 activityI 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 permissionSlide5

Children = prenatal, infants, children, adolescents, young adults, adults with pediatric conditions

Other disclosures…Slide6

Also home of…Akron Children’s Hospital

Free-standing tertiary care children’s hospital

Established in 1890

Largest pediatric provider in NE Ohio350 beds

+

2 campuses, 85+ locations

2 pediatric units in adult hospitals

Only children’s hospital in areaLarge amount of community support5 NICU/Special Care Nursery locationsMaternal/Fetal medicine practiceRegional burn center (adult + peds)School health services in 23 school districts Affiliated home care agencyNetwork of “satellite” primary care officesChild & adolescent behavioral health services (including inpatient)Slide7

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.

7Slide8

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 careIt 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 careHere’s what I really hope you hear tonight:Slide9

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 worldwideSlide10

“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 payDRGs: Prospective payment What’s here or will be soonValue-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/capitationBundled, episode-based or episode-of-care paymentsSlide11

Like everything, it’s a spectrum

11

Note: Many models of this type of care already existSlide12

What does it all mean for patients & providers?

Focus on quality

Not penalizing those caring for sicker patients

Incentivizing wellness and out-of-hospital careFocus on preventionLess duplication/inefficiencyMore transparency and comparison, public reportingEconomies of scale

More individual responsibility for health & outcomes

Disadvantages too…

12Slide13

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 lackingSlide14

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 presentTime constraintsLack of resources and $The concept of bringing the best of each of our disciplines to the bedside is not being fully realizedWe lack skills to do this wellThe current system does not support or reward us to care for complex patients and familiesTime constraintsLack of resources and $Slide15

If you ask patient and families this question…

Lack of coordination

of care among the health care team

Lack of communication regarding optionsPain management is poorFamilies 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 care24/7/365 care of my chronically/seriously ill child is overwhelmingSlide16

What’s broken? What are the gaps?

Children are suffering

Uncontrolled pain and other symptoms

Powerless over body and decisionsFamilies and communities are sufferingFragmented care

Burden of uninformed, lifelong decisions

Caregivers are suffering

Witnessing unmitigated suffering

Powerless over barriersHealth care institutions/systems are sufferingOverburdened with high-cost careUnderstaffedSlide17

Jonathan27-week premie

Severe congenital hydrocephalus/

Hypoxic Ischemic Encephalopathy

Multiple involved subspecialists: Neurology Neurosurgery GI Pediatric Surgery Orthopedics Pulmonology

General Pediatrician

Symptoms:

Pain (spasms? headache?)

SeizuresSialorrheaConstipationDysautonomiaSpasticityNeuroirritabilityImpacts:Quality of life, comfortFoster care w/elderly foster parents1 hour from hospitalMedication interactionsMultiple appointmentsA DAY IN THE LIFESlide18

The gapsChildren 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 careparental stress/burnoutunsafe careSlide19

Care of children with chronic, complex and/or life-threatening conditions & their families is suboptimal across multiple domainsParents 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?Slide20

OpportunityPediatric Palliative Care (PPC) as a bridge:

an answer to the Triple Aim of Health CareSlide21

The “Triple Aim” of Healthcare

IHI triple aim:

Improve CARE

Patient experienceQuality and satisfactionIncrease health of populationsDecrease costAnother TrifectaKeep me safe

Keep me satisfied

Keep me WELLSlide22

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 reformSlide23

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 baseReplicable/scale-ableCoordinating care for children with complex, chronic conditions to improve QOL and decrease costsKeeping chronically ill children as healthy as possible

Keeping family members of chronically ill children as healthy as possible…for as long as possibleSlide24

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 prognosisSlide25

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 ofAny treatment can be classified as palliativeSlide26

Specialized medical care for people with serious illnessesFocused 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 supportAppropriate at any age and at any stage in a serious illness

Should be provided

together with curative treatment

.

2011 Public Opinion Definitionwww.capc.orgSlide27

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 familySlide28

Palliative Care for children…

Seeks to prevent or relieve symptoms produced by a

life-threatening

medical condition or its treatmentWorks 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 possibleProvides families with timely and accurate information and support in decision makingProvides support for caregiversSlide29

Anticipatory guidance for children with medical complexityMedical home (or garage?) for children with complex, chronic and/or life-threatening conditions

Definition at Akron Children’sSlide30

PREVENTIONLike immunization against crisis-driven, desperate, expensive decision makingProviding partnered/shared decision making for families facing life-threatening conditions

Families AND providers make better, more informed decisions

Decreases decisional regret

Lessens collateral damageAnticipatory GuidanceSlide31

Pain managementManagement of other distressing symptoms

infection dyspnea respiratory distress

cough fatigue weakness

secretions edema depression anxiety insomnia sleep disorders nausea vomiting poor appetite/feeding diarrhea bleeding constipation

anemia pruritis seizures

increased ICP

hypotonia

rigidity/spasms agitation irritability behavior changes “storming” dry mouth dysuria/incontinence Physical/Medical Elements of PPCSlide32

Non-physical Elements of PPC

Attention to:

the whole person

the person within the family and community structurepsychological and spiritual domainsachievement of goalsdevelopmental milestones

social and practical concerns

bereavement issues

including anticipatory and post-death

loss of expected life Slide33

What Palliative Care is NOTEquivalent to hospice

Giving up cure-directed treatment

Giving up altogether

DNRTaking away hopeOnly for children with cancerOnly for people who are going to die soonOnly for people who are at homeThe death squad, here to give morphine & make death happen fasterSlide34

PC is outgrowth of the hospice movementPalliative 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 PCFinancial distinction

Palliative care

vs

. hospiceSlide35

Models of Local/Regional PPCChildren’s hospitals

58-74% have palliative care programs

Pediatric hospitals within hospitals

Hospice agenciesCommunity-based home healthPrimary care/medical home modelsFree-standing pediatric hospice/palliative care/respite facilitiesLong-term care facilities

35Slide36

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 entityGoal is integration with primary teamKeeping 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

therapyGood palliative care may allow curative therapy to occurTrend: Early Integration of PPCSlide37

Who are the villagers providing PPC?

Doctors (PC cert) Pharmacists

Nurses/NPs Volunteers

Social workers Case managersBereavement Coord Secretaries/office mgrs

Expressive therapists

Spiritual care providers

Psychologists

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 themselvesSlide38

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 mobilityRequire special health care support and/or equipment due to paralysis or chronic diseaseAny child whose life trajectory is altered by underlying illness or injury (congenital or acquired)Slide39

The short answer to the question:

A Palette of CareSlide40

Our Palette Mission

To

integrate legendary and indispensable

pediatric palliative care into the journey for all children facing serious illness and their familiesTo provide leadership in education, research, and advocacy initiatives in pediatric palliative care locally, regionally, nationally and internationallySlide41

PPC at ACH

Academic Division of Pediatrics since 2002

Any age with pediatric diagnosis or specialist

Any chronic, complex or life-threatening conditionHospital-based team available 24/7/365Inpatient consultationInpatient 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 visitsPrimary medical management when appropriateSlide42

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

visitsEyes and ears in the homeActive participation with hospital rounds/committeesInpatient and “home visit” coverage for local long-term care facility for children with disabilitiesSlide43

A short insider’s view

https://

www.youtube.com/watch?v=sikOe1RR3KA

www.neomed.edu/educationalmediaSlide44

Tyler:Juvenile

Pilocytic

AstrocytomaPseudo-obstructionPanhypopituitarism, esp DISevere medical fragilityVP shunt

Symptoms:

Pain (headache, gut)

Severe, chronic constipation

Neuroirritability/frustrationDysautonomiaFrequent infectionsAnxiety/agitationImpacts:2 working parentsConstant hospitalizationImpaired communicationLife revolved around stoolSlide45

What do we do for families?

LISTEN

Help make good decisions

Help relieve symptomsImprove quality of life, and quantity too!Help create memories

Support with siblings, other family

Bereavement help

Financial help

Care coordination – “a life-line”Slide46

What do we do besides medical care?

Home visits

24/7 availability

Prenatal consultationCase 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 supportSchool interventions/IEPsSupport groups, including siblings and grandparentsIndividual counselingMemory makingBereavement care as long as desiredEducation everywhere!Advocacy – local, state, nationalSlide47

2050+ patients/families enrolledALOS

1017 days

60-65% Medicaid/Medicaid HMO

47/88 Ohio counties, plus other statesTop 4 reasons for referral:Family supportCare coordinationPain/Symptom management

EOL planning

Haslinger Center Statistics: Since 2002Slide48

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 reformSlide49

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 childMH concept endorsed as state-wide policy in HawaiiSlide50

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 transformation2007: AAP joins with AAFP, ACP, and AOA on Patient Centered Medical Home Joint Principles2007-10: MH takes off. Demonstration projects in every state with support from government, academia, payers, and philanthropic organizationsSlide51

Joint Principles of the

Patient-Centered Medical Home

American Academy of Pediatrics

American Academy of Family Physicians

American College of Physicians

American Osteopathic Association

Slide52

Medical Home Definition

Primary care

Family-centered partnership

Community-based, interdisciplinary, team-based approach to careCare that is: accessible, family-centered, coordinated, compassionate, continuous, and culturally effective.Preventive, acute and chronic careQuality improvementSlide53

Medical Home ModelSlide54

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 episodesDoes not reduce costs within hospitalizations

“Measuring Medical Homes: Tools to Evaluate the Pediatric Patient- and Family-Centered Medical Home”

Malouin

RA &

Merten SLNational Center for Medical Home Implementation - AAPSlide55

Perrin, J. M. et al. Arch

Pediatr

Adolesc

Med 2007;161:933-936.Slide56

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, MDSlide57

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 MedicaidMedicaid is largest payer (2/3) because their care outstrips coverage from commercial plansBecoming more complicatedDeath rate far higher than that of healthy children*Children’s Hospital AssociationSlide58

50,000 children die annually in the US1 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 programsNational StatisticsSlide59

Higher math: It’s not about dying

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 yearEstimated 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 patientsSlide60

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 childrenWellness-based careTier 2 – Non- or episodic-chronic conditionsSeverity, not complexityCase management

Tier 3 – Coordinated, “hub” careSlide61

Local Statistics

In 2010 at ACH

15% of patients

1-2% of children nationwide35% of hospital days45% of charges% change from 2004-201065% growth in # of patients100% growth in # of patient daysSlide62

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 costDeveloping care coordination plansIncreasing healthy weight status of complex patients62Slide63

Seamless, non-fragmented care coordination

24/7/365 access

Health

care providers familiar with their childStreamlined communicationCure-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 painRespite careCare available wherever most comfortableWhen a child will not survive…Maintain hope until the endGrief/bereavement support for as long as desiredWhat do families of children with CCC want?Slide64

Specific Measures

Process measures

Transparent and replicable

Improved parent and PCP-reported access to and satisfaction with coordination and needed careIncreased 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 resiliencySlide65

Our overall goal

Partner with PCPs to provide a comprehensive medical home for children with complex needs by:

Providing case management which is often time consuming, inefficient and/or expensive

Creating a care plan with the family and PCP for the child when well or ill, at home or in the hospital

Enhancing access to other supportive services to enhance family-centered, goal-driven care

Providing anticipatory guidance PRIOR TO engagement with medical technologySlide66

CARE TEAM

Core team

PCPs and involved specialists

Case ManagersSocial WorkersDietitianPhysician leadership24/7 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 therapySlide67

Complex Care Methods

Care coordination

Home visits

Follow-up phone calls after hospitalizations and ER visitsMedication reconciliation

Communication with PCP

Comprehensive care plan development with family

Family resource bundle

Personal health recordNutritional screening and evaluationAnnual physical assessment and as neededAnnual formula evaluation and as needed67Slide68

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 reformSlide69

Integrated Health System

Patients and Families

Primary Care Physicians

Specialists and subspecialistsHospitals and Healthcare FacilitiesPublic HealthCommunity

Doesn’t this sound like Palliative Care to you?Slide70

Pediatric ACO Mandatory Elements for performance

Education

Social

Mental HealthPhysical HealthTransparencyCommunity LeadershipConsumer Trust

Doesn’t this sound like Palliative Care to you?Slide71

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 baseReplicable/scale-ableCoordinating care for children with complex, chronic conditions to improve QOL and decrease costsKeeping chronically ill children as healthy as possible

Keeping family members of chronically ill children as healthy as possible…for as long as possibleSlide72

Outcomes of quality PPC

Helps

the institution meet external accreditation or performance

standardsJCAHO

Magnet

Increases

patient and family

satisfactionWith PPC but also with hospital, other servicesIncreases downstream referralsIncreases staff satisfactionCompassion fatigue, moral distress, retentionACO “continuum of care” ingredientRole in HRO managementHelp meet pay-for-performance or quality goalsImproves safetySlide73

Impact of Wide-Spread PPCImproved access to high-quality care

Decreased fragmentation

Improved SAFETY

Lower costMore proactive, preventive careImproved overall healthPatient, family, communityBetter family outcomes

73Slide74

What it’s really all about

COMMUNICATION

COMPASSION and HUMILITY

COORDINATIONACCESS

QUALITY

EASING SUFFERING

MEETING A

FAMILY WHERE THEY ARE AND WALKING A JOURNEYMEETING OTHER CAREGIVERS WHERE THEY ARE AND WALKING A JOURNEYBEING ABLE TO GET UP IN THE MORNING AND DO IT ALL OVER AGAINSlide75

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 needsChildren and families who receive palliative care LIVE BETTER and at least as long, if not longer!Slide76

sfriebert@chmca.org

“Hope

is a verb with its shirtsleeves rolled

up” David Orr