ObjectivesDiscuss differences in EOL Care for ChildrenUnderstand the 4 domains of Quality of LifeDiscuss roles in a Pediatric Palliative Care

Team.Discuss implications for the transition to

palliative care.Identify techniques to promote an

interdisciplinary approach to children at end of life.

Pediatric Palliative CareDeath of a child is

viewed as outside the natural order of life.

Children represent hope, energy, and health

53,000 Pediatric Deaths a year

Population of Children Under 18

Children with Special Health

Care Needs

Children with Complex

Chronic Conditions

ChildDeath

s

10,743,211 – 16,528,017Bethell et al., 2008

82,640,086US Census Bureau, 2008

644,593 – 1,652,802Bramlett et al., 2008

18,989 Neonatal, 9538 Infant24,519 ages 1-19 (~12,260 due to CCC)

National Vital Statistics ReportNatthews & MacDorman, 2008

Hellsten, 2009, in press

Palliative Care

Curative Focus:Curative Focus:Disease-Specific Disease-Specific

TreatmentsTreatments

Palliative Focus:Palliative Focus:Comfort / Supportive Comfort / Supportive

TreatmentsTreatmentsBereavementBereavement

SupportSupport

Definition“active, total approach to care, embracing

physical, emotional, social, and spiritual elements. It focuses on enhancement of the quality of life for the child and support for the family, and includes management of distressing symptoms…”

Lantos JD, Arch Dis Child Fetal Neonatal Ed 1994

Treatment GoalsCurative Focus & Palliative Care Focus

When should possibility of death be discussed?Treatment goal becomes palliationFocus of hope

successful palliative careFocus on quality of life

Core Concepts of Palliative Care/Hospice Care

RespectComprehensive careUtilizing the strength of the

interdisciplinary processCare for the caregiverBereavement Support

Core Concepts of Palliative Care/Hospice Care

Respect:Family centered careWhat is “family”?Patient and family values / beliefs, cultural and

spiritual perspectivesAssist patient and family in establishing goals

(ongoing process)patient / family preferences

Core Concepts of Palliative Care/Hospice Care

Comprehensive care:Do not abandonPhysical comfortEmotional / spiritual supportAffirm the parental roleSupport to other family

Core Concepts in Palliative Care/Hospice Care

Interdisciplinary Team:Accountable team

RN, MD, SW, Psychologist, Chaplain, Child Life, Volunteers

Incorporate Institutional / community resources

Seamless Care

Core Concepts in Palliative Care/Hospice Care

Care of the Caregiver:Demands on family

Physical, emotional, financialServices available

24 hour availability of help counseling Personal care assistance

Anticipate needs

What is Quality of Life to Kids?Stakeholder Study—2003 JP DTIndicators For QOL1. To be at home.2. To be pain free.3. To be loved.4. To be a kid.5. To do activities.6. To have purpose.

Model of Quality of lifePhysical Well-Being

Psychological Well-Being

Social Well-BeingSpiritual Well-Being

Ferrell, et al, 1991

Physical Well-BeingPain

Multiple other symptoms

Mobility

Equipment needs

Impact on family caregivers

Psychological Well-BeingWide range of emotions and concernsMeaning of illnessCoping Cognitive assessmentDepression

Social Well-BeingRelationship/role description

Caregiver burden

Financial concerns

Impact on siblings

Spiritual Well-BeingReligion and spirituality

Seeking meaning

Hope vs. despair

Importance of ritual

PhysicalFunctional AbilityStrength/Fatigue

Sleep & RestNauseaAppetite

ConstipationPain

PsychologicalAnxiety

DepressionEnjoyment/Leisure

Pain DistressHappiness

FearCognition/Attention

Quality of Life

SocialFinancial BurdenCaregiver Burden

Roles & RelationshipsAffection/Sexual Function

Appearance

SpiritualHope

SufferingMeaning of Pain

ReligiosityTranscendence

Adapted from Ferrell, et al. 1991

Kids vs. Adults--- Differences in Hospice DeliveryDifferences in Patients-1. Children are not usually legally

competent to make decisions regarding their care

2. Children are in a developmental process that affects understanding and articulation of illness and health, life and death, loss and grief….

Growth & Development

Experience

through

sensory

information

Aware of

tension and

unfamiliar and

seperation

Comfort by

touch, rocking,

sucking and familiar

people and toys

I nfancy

Growth & Development

See death as reversible

Death is not

personalized

magical thinking

May play with stuf fed

animal lying it down "dead"

May equate death with sleep

Wish it away

Provide concrete

information

"A dead person no longer

eats"

Early Childhood2-6 years old

Growth & Development

Personalize death

Aware death as f inal

May understand

causality

Aware that death can

happen to them

understand that death

can be caused by illness

May request graphic

details about death

Talk about disease

specif ics

Middle Childhood7-12 years old

Growth & Development

Appreciate universality

of death but may

distance self f rom

it

Risky behavior

"it can't happen to me"

"everyone dies anyway"

May speak of

unrealized plans

Adolescence13-18 years old

Differences Cont…3. May not have the verbal skills to

describe needs.4. Frequently protect parents and

other significant persons at personal expense to themselves.

5. More often High Tech Medical cases

Differences---Family Issues1. Families often have other minor children,

siblings to the patient, often there is difficulty communicating with them, involving them and maintaining family patterns.

2. Siblings stresses and burdens.3. Grandparents….dealing with issues with

their children as well.4. Stress and burden of the child's disease tends

to be lengthy.5. Fears of home vs. hospital6. Less reimbursement options and more

financial strain

Differences –Professional Caregiver Issues1. May want to protect the child and family

from the truth.2. Sense of failure at being unable to

“save” the patient.3. May have out of date concepts about

pain management for children.4. May have own “baggage” that affects

care.5. May have Knowledge Deficits regarding

pediatric care.

Cont….6. Professional caregivers may have a

strong sense of ownership of the child, to the exclusion of the parents, and may even assume that they know what is best for the child.

Differences---Institutional/Agency Issues1. Limited Reimbursement, additional

funding must be secured.2. Usually very high staff intensity3. Need for special competencies in

the management of developmental levels, family/sibling issues, and pain and symptom assessment

4. Different focus on bereavement care

Cont…5. Strong resistance among physicians

to make a 6-month prognosis.

Ethical IssuesPain controlPhase I medicationsSupplemental nutrition / hydrationDNR statusTeen decision making—Assent/Consent

The Role of CommunicationClear communication and encouragement of

open discussion and shared decision making, when appropriate, can avert many ethical dilemmas.

Communicating With Dying Children Goals1. Try to understand your own feelings.2. Assess and meet the needs of the

particular child.3. Correct misconceptions.4. Allow for fears.5. Reduction of isolation.

Recommendations:1. Communicate with kids age

appropriately and, in the language most comfortable to them. (Play is most usually the Universal Language for most kids)

2. Build and nurture trust.3. Always be invited.4. Empower children as much as

possible.5. Recognize when alone time is needed.

The Role of the Social WorkerProvide emotional support and counseling to

the patient and the patient’s family.Help to build a community of support around

the patient and his/her family.Advocate for the patient’s needs.Provide support and consultation to

community professionals who are involved with the patient and his/her family.

Role of the RNAnticipate

possible side effectsPrevent

suffering through careful planningTreatment

reduce symptoms and suffering

Role of the RNPromote

Opportunities to live fullyAdvocate

for the child and family

Role of the RNMedical ManagementPhysical / emotional presenceEducator / resource (Knowledge is comfort.

Ignorance is fear)RespiteHigh tech management

Palliative Care Physician/Medical DirectorOver sees the patients care plan/IDTConducts meetings with family to

engage in Goal planning and care plan direction

Offers consultation to other physicians with regard to palliative care

Engages in pain and symptom management

Educates

Role of VolunteersPatient and family support through

many avenues:ListeningPlayingHome support, groceries,

laundry ,yard workSibling workIntegral member of IDT

GoalsBring emotional and physical comfortIdentification and planning around medical,

psychosocial, and spiritual issuesHelp family identify their needsSeamless carePeaceful death with dignity

Professional BoundariesHonor family spacePhysical and emotionalRecognize potential problemsKeep ego in checkRely on team members for advice and support

Self InventoryIdentify what you can offerKnow when to ask for helpKnowledge strengths / deficitsEmotional needsPotential barriers to professional, objective

careIdentify and use good stress relief strategies

Self InventoryIdentify colleagues / friends who may serve as

outlets for feelings / frustrations

Care within the Dying Process

Identification of needs and honoring of wishesDefinition of rolesManaging of physical decline (pain and

symptom management)Advocacy for child and family

Options of CareDetails of DNR (comfort bracelet)Hospital / Home (both?)HospiceSupportive careRespite for caregivers

Needs AssessmentInterdisciplinary processPrioritize needsComfortDNR statusWishes for time of deathCyclical process

Goals of CarePartner with patient and parents

Educate and collaborate on treatment planPain management plan

Side effects of medicationsChild can sleep undisturbed by painChild is able to move with minimal painChild is pain free at restChild has own goals to complete prior to EOL

RolesEstablish a chain of communication within the

palliative care teamBe cognizant of patient and family needs and

wishesDefine all clinician roles Allow family to define their roles

When Death is NearLet families choices and decisions guideRemember to honor sacred space for familiesHonor all wishes possible with regard to

personnel present Calls to MD / TeamHave phone numbers readily available

Interventions at Time of Death

Try to have contact with the funeral home ahead of time and discuss family wishes with regard to post mortem protocol

Give whatever time is needed.Family may want to do post mortem bath /

care

Interventions at Time of Death

Be a presence (silence is O.K.)

Gentle touchKeep focus on family

( do not speak of personal exp)

refer to child by name

Avoid platitudes (“time heals all wounds” “You’re lucky, it could have been worse”

If in doubt about what to do, LISTEN!

Do not forget siblings

Interventions at Time of Death

Offer:Bereavement packethand molds / foot printMemory boxhairquiltRespect family wishes and rituals

Needs of a Dying ChildLove, security, reassurance (Maslow)honesty and informationcontrolprivacyrelief (physical, spiritual, emotional)

Follow UpHave designated colleague / friend you can go

to for supportTeam follow up extremely important for

debriefing / sharing of feelingsFollow up with family

Annual Pediatric Memorial ServiceBereavement ProgramPatient funerals / memorials

Words of Truth“Although the world is full of suffering, it is

also full of overcoming it” Helen Keller

“What greater pain could mortals have than this: to see their children dead”

Euripides circa 420BC

Many Thanks

Beautiful Colors andBeautiful Things andBeautiful People.What special gifts you have given all of us.Mattie Stepanek July 1990-June 2004Thank you Mattie……..