pediatric health care

Module 1:Introduction to Pediatric Palliative Care

CENLEEnd-of-Life Nursing Education Consortium

Pediatric Palliative Care

CENLE Pediatric Palliative Care

CCEENNLLEE Pediatric Palliative Care

Pediatric Health Care

Late 1800's

Early to mid 1900's

History of pediatrics

Child Health Sub-populations

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


Pediatric Death

Death in developing countries Death in the United States


Disease/Dying Trajectories

Sudden, unexpected death Death from potentially curable

disease Death from lethal congenital anomaly Death from progressive conditions

with intermittent crises


Site of Pediatric Death

Institutions Intensive care units


Death and Dying Disparities

Child perspective Family perspective Sibling perspective

Grandparents perspective

Community perspective

Schools


Philosophy and Principles of Hospice

Hospice Definition History


Hospice Eligibility

Medicare Hospice Benefit Medicaid Hospice Benefit Not all hospice programs will

care for children Palliative/hospice care: changing

the model


Palliative Care

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

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

BereavementBereavementSupportSupport


Philosophy and Goals of Hospice and Palliative Care

Philosophy of care

Goals of care


Principles of Hospice & Palliative Care for Children

Precepts of Palliative Care for Children

Child and family as unit of care Adolescents and young adults have

distinctive needs Attention to physical, psychological,

social and spiritual needs


Principles of Hospice and Palliative Care (cont.)

Interdisciplinary team approach


Principles of Hospice and Palliative Care (cont.)

Education and support of child and family

Extends across illnesses and settings

Bereavement support


Models of Pediatric Palliative and/or Hospice Care

Hospital-based programs Free-standing facility Hospice-based programs Community agency or long-term

care facility

Friebert, 2009


Massachusetts Pediatric Palliative Care Network: Implementation of State-Funded Program

Consult services Decreased cost 100% of deaths occurred at

families requested location Median length of stay on service

= 233 days Bona et al.,

2011


Development Issues in Pediatric Palliative Care

Comprehension Communication Fears Development theories & tools Child needs to protect family


Stages of Development

Infancy Toddlerhood Preschool Age School Age Adolescence


Barriers to Quality Care at the End of Life

Uncertainty of prognosis Overtreatment Limit of therapy Insensitivities to cultural concerns Communication breakdown Other Limitations:

-Financial

-Geographical


Barriers to Quality Care at the End of Life (cont.)

Lack of adequate training of professionals

Delayed access to hospice/palliative care

—Death denial


Nurse's Role in Pediatric Palliative Care

Anticipating Preventing

Treating

Promoting

Advocacy


Nurses Role in Pediatric Palliative Care (cont.)

The importance of presence Maintaining a realistic

perspective

Nurses as the safety net


Hope within Pediatric Palliative Care

Meaning of hope Hope vs. despair Role of hope


A Dose of Caring


Model of Quality of Life

Physical

Well-Being Psychological

Well-Being Social Well-Being Spiritual

Well-Beinghttp://prc.coh.org

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


To Comfort Always


Suffering State of severe distress that

threatens intactness of the person

Failure to respond to needs intensifies suffering

Depth of suffering

Ferrell & Coyle, 2008


Neonatal Suffering

Assess the family unit for suffering (including siblings)

AAP, 2000


Healing Touch

pediatric health care

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