Palliative Care in the NICU

ANGELS Perinatal ConferenceApril 7, 2011

Background and definitions

Important aspects of palliative care services

Parents’ perspectives

Practical applications

Objectives

Total Deaths

Infant

Age 1-4

Age 5-9

Age 10-14

Age 15-19

Pediatric Mortality

Annual Summary of Vital Statistics 2008. Pediatrics 2011; 127:146-157.

US◦ Infant mortality: 6.59 per 1000 live births◦ Neonatal mortality: 4.27 per 1000 live births

Arkansas◦ Infant mortality: 7.35 per 1000 live births◦ Neonatal mortality: 4.38 per 1000 live births

Infant Mortality

Annual Summary of Vital Statistics 2008. Pediatrics 2011; 127:146-157.

Cause of DeathCongenital malformations

Complications of prematurity

SIDS

Maternal complications of pregnancy

Complications of placenta/cord/membranes

Accidents/unintentional injuries

Bacterial sepsis

Respiratory distress

Diseases of the circulatory system

Neonatal hemorrhage

Infant Mortality

Annual Summary of Vital Statistics 2008. Pediatrics 2011; 127:146-157.

Cook, Watchko. J Perinatology 1996◦ 82% of NICU deaths occurred after decision to

limit, withhold, withdraw treatment

Wall, Partridge. Pediatrics 1997◦ 73% of deaths in the ICN attributable to

withdrawal or withholding of life-sustaining treatment

Singh, Lantos. Pediatrics 2004◦ 42% of NICU deaths involved active withdrawal

Death in the NICU

Capable of living, physically fitted to live

Having reached such a stage of development as to be capable of living, under normal conditions, outside the uterus

Capable of normal growth and development

Definitions: Viability

Viable ≠ Liveborn

Viable ≠ Response to Resuscitation

Definitions: Viability

102 infantsBWT 640 ± 86gGA 24.9 ± 1.5 weeks

Singh, et al. Pediatrics 2007; 120:519-26.

Previable

Periviable

Nonviable

Unresponsive to therapy

Unduly burdened

What is a “nonviable” infant?

Saunders, 1969

Duff and Campbell, 1973

Whitfield, 1982

Initiative for Pediatric Palliative Care (IPPC), 1998

Catlin and Carter, Leuthner

History of Palliative Care

Encompasses end of life care

Comprehensive care of the patient and family: medical, psychosocial, emotional, and spiritual needs

Multidisciplinary team approach

Focus is on quality of life for the child and support for the family

Definitions: Palliative Care

Provide appropriate treatment

Maximize quality of life

Ensure peaceful and dignified death

Support families through the dying and bereavement process

Goals of Palliative Care

“ The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick.”

E. Cassell

The Words We Use

“There is nothing (more) we can do”

“Withdrawal of care”“Withdrawal of support”

“Letting nature take its course”

o Let families know they will not be abandoned

o Assure families we will continue to care for their infant

When early death is very likely and survival would be accompanied by high risk of unacceptably severe morbidity, intensive care is not indicated

When survival is likely and risk of unacceptably severe morbidity is low, intensive care is indicated

For cases that fall in between these two categories, in which prognosis is uncertain but likely to be poor and survival may be associated with a diminished quality of life, parental desires should determine the treatment approach

AAP Recommendations

Certainty of diagnosis

Certainty of prognosis

Meaning of that prognosis to the family

Important Considerations

Stillborn infants

Infants at the limits of viability

Infants with lethal birth defects/anomalies

Infants unresponsive to ongoing intensive care, or for whom such care is more burdensome than beneficial

Candidates for Palliative Care

Genetic problems

Renal anomalies

CNS abnormalities

Cardiac disease

Structural anomalies

Candidates for Palliative Care

Severe brain injury

Overwhelming sepsis

NEC and short gut

Severe lung disease

Unable to wean from ECMO

Candidates for Palliative Care

Non-initiation of intensive care

Non-escalation of intensive care

Active withdrawal of life-sustaining treatment

Levels of Palliative Care

Location

Respect for cultural and spiritual needs

Preparation and support for the family

Symptom management

Meaningful rituals

Aspects of Palliative Care

Begins at the time of diagnosis

Alternative to termination or aggressive treatment in the NICU

Multidisciplinary care for the pregnancy

Intrapartum management and development of a birth plan

Perinatal Palliative Care

22-25 weeks completed gestation

Medical treatment changes from “clearly futile” to “clearly beneficial”

Survival increases with each completed week of gestation

High incidence of neurodevelopmental disability in survivors

The “Gray Zone” of Viability

Inaccuracy of gestational age and fetal weight estimates

Other variables are important

Uncertainty of outcome/prognosis

Differences between healthcare workers

Parental expectations

Ethical issues

What Makes it Gray?

Accurate and consistent information

Balance honesty with hope

Joint decision-making

Trial of therapy may be reasonable

Care of the Periviable Infant

Blanco, et al. Pediatrics 2005; 115:e478-87.

Information◦ Clear, concrete, consistent, compassionate, timely

Involvement in decision-making

Control

Emotional support

Competent and compassionate medical care

What Parents Need

Appropriate environment

Post-partum needs of the mother

Support and involvement of siblings

Preparation for the death and bereavement process

Practical Points

Respectful treatment of the infant

Symptom control

Creating memories

Autopsy and organ/tissue donation

Practical Points

Interpret medical information

Day-to-day care of the infant

Relationships with the family

Creating memories

Importance of Bedside Nurses

Making Memories

www.mamiespoppyplates.com

Beyond End of Life Care

A

B

Gale, Brooks. Advances in Neonatal Care. 2006; 6: 37-53.

The Initiative for Pediatric Palliative Care www.ippcweb.org

Holistic care of the child

Support of the family unit

Involvement of the family in decision-making and care planning

Relief of pain

Continuity of care

Grief and bereavement support

Alive Alonewww.alivealone.org

  Balloon Release

www.balloonrelease.com  Bereaved Parents USA

www.bereavedparentsusa.org

Grief Watchwww.griefwatch.com

Bereavement Resources

The Compassionate Friends www.compassionatefriends.org

Caring Connectionswww.caringinfo.org

Kaleidoscope Kidswww.kaleidoscopekids.org

Center for Good Mourning - Arkansas Children's Hospitalwww.archildrens.org

Bereavement Resources

“ The goals of neonatal care may need to be expanded beyond seeking mere survival. Successful care also must include supporting a family in finding meaning in their baby’s life, however long that might be. Failure may be judged best not in mortality statistics, but in how much unnecessary suffering for infants and families remains unattended.”

Carter. Neoreviews 2004; 5:e484-89.

“…For You created my inmost being; You knit me

together in my mother’s womb…Your eyes saw my unformed body; all the days ordained for me were written in Your book before one of them came to be…” Psalm 139:13,16

The goal is to add life to the child’s years,

not simply years to the child’s life.