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

CCEENNLLEE Pediatric Palliative Care

Pediatric Death

Death in developing countries Death in the United States

CCEENNLLEE Pediatric Palliative Care

Disease/Dying Trajectories

Sudden, unexpected death Death from potentially curable

disease Death from lethal congenital anomaly Death from progressive conditions

with intermittent crises

CCEENNLLEE Pediatric Palliative Care

Site of Pediatric Death

Institutions Intensive care units

CCEENNLLEE Pediatric Palliative Care

Death and Dying Disparities

Child perspective Family perspective Sibling perspective

Grandparents perspective

Community perspective

Schools

CCEENNLLEE Pediatric Palliative Care

Philosophy and Principles of Hospice

Hospice Definition History

CCEENNLLEE Pediatric Palliative Care

Hospice Eligibility

Medicare Hospice Benefit Medicaid Hospice Benefit Not all hospice programs will

care for children Palliative/hospice care: changing

the model

CCEENNLLEE Pediatric Palliative Care

Palliative Care

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

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

BereavementBereavementSupportSupport

CCEENNLLEE Pediatric Palliative Care

Philosophy and Goals of Hospice and Palliative Care

Philosophy of care

Goals of care

CCEENNLLEE Pediatric Palliative 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

CCEENNLLEE Pediatric Palliative Care

Principles of Hospice and Palliative Care (cont.)

Interdisciplinary team approach

CCEENNLLEE Pediatric Palliative Care

Principles of Hospice and Palliative Care (cont.)

Education and support of child and family

Extends across illnesses and settings

Bereavement support

CCEENNLLEE Pediatric Palliative Care

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

CCEENNLLEE Pediatric Palliative Care

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

CCEENNLLEE Pediatric Palliative Care

Development Issues in Pediatric Palliative Care

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

CCEENNLLEE Pediatric Palliative Care

Stages of Development

Infancy Toddlerhood Preschool Age School Age Adolescence

CCEENNLLEE Pediatric Palliative Care

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

CCEENNLLEE Pediatric Palliative Care

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

Lack of adequate training of professionals

Delayed access to hospice/palliative care

—Death denial

CCEENNLLEE Pediatric Palliative Care

Nurse's Role in Pediatric Palliative Care

Anticipating Preventing

Treating

Promoting

Advocacy

CCEENNLLEE Pediatric Palliative Care

Nurses Role in Pediatric Palliative Care (cont.)

The importance of presence Maintaining a realistic

perspective

Nurses as the safety net

CCEENNLLEE Pediatric Palliative Care

Hope within Pediatric Palliative Care

Meaning of hope Hope vs. despair Role of hope

CCEENNLLEE Pediatric Palliative Care

A Dose of Caring

CCEENNLLEE Pediatric Palliative Care

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

CCEENNLLEE Pediatric Palliative Care

To Comfort Always

CCEENNLLEE Pediatric Palliative Care

Suffering State of severe distress that

threatens intactness of the person

Failure to respond to needs intensifies suffering

Depth of suffering

Ferrell & Coyle, 2008

CCEENNLLEE Pediatric Palliative Care

Neonatal Suffering

Assess the family unit for suffering (including siblings)

AAP, 2000

CCEENNLLEE Pediatric Palliative Care

Healing Touch