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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.