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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.
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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
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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
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Palliative Care
Curative Focus:Curative Focus:Disease-Specific Disease-Specific
TreatmentsTreatments
Palliative Focus:Palliative Focus:Comfort / Supportive Comfort / Supportive
TreatmentsTreatmentsBereavementBereavement
SupportSupport
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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
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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
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Core Concepts of Palliative Care/Hospice Care
RespectComprehensive careUtilizing the strength of the
interdisciplinary processCare for the caregiverBereavement Support
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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
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Core Concepts of Palliative Care/Hospice Care
Comprehensive care:Do not abandonPhysical comfortEmotional / spiritual supportAffirm the parental roleSupport to other family
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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
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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
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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.
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Model of Quality of lifePhysical Well-Being
Psychological Well-Being
Social Well-BeingSpiritual Well-Being
Ferrell, et al, 1991
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Physical Well-BeingPain
Multiple other symptoms
Mobility
Equipment needs
Impact on family caregivers
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Psychological Well-BeingWide range of emotions and concernsMeaning of illnessCoping Cognitive assessmentDepression
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Social Well-BeingRelationship/role description
Caregiver burden
Financial concerns
Impact on siblings
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Spiritual Well-BeingReligion and spirituality
Seeking meaning
Hope vs. despair
Importance of ritual
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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
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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….
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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
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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
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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
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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
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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
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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
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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.
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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.
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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
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Cont…5. Strong resistance among physicians
to make a 6-month prognosis.
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Ethical IssuesPain controlPhase I medicationsSupplemental nutrition / hydrationDNR statusTeen decision making—Assent/Consent
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The Role of CommunicationClear communication and encouragement of
open discussion and shared decision making, when appropriate, can avert many ethical dilemmas.
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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.
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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.
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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.
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Role of the RNAnticipate
possible side effectsPrevent
suffering through careful planningTreatment
reduce symptoms and suffering
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Role of the RNPromote
Opportunities to live fullyAdvocate
for the child and family
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Role of the RNMedical ManagementPhysical / emotional presenceEducator / resource (Knowledge is comfort.
Ignorance is fear)RespiteHigh tech management
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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
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Role of VolunteersPatient and family support through
many avenues:ListeningPlayingHome support, groceries,
laundry ,yard workSibling workIntegral member of IDT
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GoalsBring emotional and physical comfortIdentification and planning around medical,
psychosocial, and spiritual issuesHelp family identify their needsSeamless carePeaceful death with dignity
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Professional BoundariesHonor family spacePhysical and emotionalRecognize potential problemsKeep ego in checkRely on team members for advice and support
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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
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Self InventoryIdentify colleagues / friends who may serve as
outlets for feelings / frustrations
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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
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Options of CareDetails of DNR (comfort bracelet)Hospital / Home (both?)HospiceSupportive careRespite for caregivers
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Needs AssessmentInterdisciplinary processPrioritize needsComfortDNR statusWishes for time of deathCyclical process
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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
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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
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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
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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
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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
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Interventions at Time of Death
Offer:Bereavement packethand molds / foot printMemory boxhairquiltRespect family wishes and rituals
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Needs of a Dying ChildLove, security, reassurance (Maslow)honesty and informationcontrolprivacyrelief (physical, spiritual, emotional)
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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
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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
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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……..