Pediatric Palliative CarePerinatal and Newborns

Tressia Shaw, MDPam Roman, RN, CHPPN

What do you want to learn today??

ObjectivesDefine palliative care and why it is important

for infants and children with life limiting conditions

Discuss examples of when palliative care could be useful for the child and family

Identify the role of the interdisciplinary team in palliative care

Discuss unique issues faced by the perinatal and newborn population

Why is hospice and palliative care important in the infant population?

Childhood Deaths

US: 53,287 deaths /yr 2007 statistics

29,138 in first year

>50% in infant (<1year) period

CDC 2007 data, published 2010

1 million seriously ill children with progressive medical conditions

Leading Causes of Infant DeathCongenital malformations, deformations

and chromosomal abnormalities Disorders related to short gestation and

low birth weight Sudden infant death syndrome Newborn affected by maternal

complications of pregnancy Accidents (unintentional injuries)

Trajectories of Childhood Death

Institute of Medicine

What is palliative care?

Palliative Care“Living” in the face of a life limiting conditionMay occur during curative treatment options

and at any point during the disease processInterdisciplinary family focused team

approach Psychosocial, spiritual, comprehensive pain and

symptom management, grief and bereavement support

Palliative Care Can….Help define consistent

goals of care Support best quality of

life possibleAssist in sibling supportHelp navigate difficult

decisions and assist in advance care planning

By….Assessing

patient/family’s understanding

Treating distressing pain and other symptoms

Using interdisciplinary services

Reviewing goals of care and coordinating with the team

Benefits of Palliative Care• Improved quality of life • Improved pain and symptom control • Increased satisfaction – patient and caregiver• Reduction in number of inpatient days• Increased likelihood of dying in preferred

location

What is hospice?

HospicePackage of services delivered by an

interdisciplinary team to a patient who has a life expectancy of 6-12 months

Also addresses symptom control, psychosocial care, spiritual care, and is family centered

Focuses on end of life

Case DiscussionsCongenital CMVAnencephalyHypoxic Ischemic Event at birth with

uncertain prognosis

Issues unique to Infants/ChildrenBirth and death may occur very close

togetherSurrogate decision makingMaintaining hopeUncertain/difficult prognosis for unusual

conditionsChildren are not supposed to dieEthical concerns

Local ResourcesRyan House www.ryanhouse.orgHospice of the Valley Pediatric Home Team –

Palliative Care and Hospice www.hov.orgNew Song Center for Grieving Children

www.hov.org/new_song_center.aspxPhoenix Children’s Hospital Palliative Care

Program

Additional ResourcesNational Hospice and Palliative Care

Organization www.nhpco.orgNational Network for Pediatric Palliative

Care http://www.network4pedspallcare.org/Children’s Hospice and Palliative Care

Coalition www.childrenshospice.orgGet Palliative Care

http://www.getpalliativecare.org/whatis/pediatric

Resources