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Module 2:Perinatal and Neonatal Palliative Care

CENLEEnd-of-Life Nursing Education Consortium

Pediatric Palliative Care

CENLE Pediatric Palliative Care


Perinatal and Neonatal Palliative Care

Comprehensive care in a variety of settings Best Practice Models of perinatal and neonatal programsRTS Program


History of Neonatal Intensive Care

1950’s-1960’s: NICU developmentPaternalism in decision making 1973: Duff & Campbell1982: Influence of Baby Doe Case

Hospice Education Network - ELNEC Pediatric Palliative Care - Module 2: Perinatal and Neonatal Care

Hospice Education Network (c) 2010

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History of Perinatal and Neonatal Hospice and Palliative Care

Testing and diagnostic technology advances Increased awareness Development of emerging pediatric hospice programs Research


Standards of Professional Practice

NANN - National Association of Neonatal Nurses AAP - American Academy of PediatricsNHPCO – National Hospice and Palliative Care OrganizationAWHONN – Association of Women’s Health Obstetric and Neonatal Nurses

CENLE Pediatric Palliative CareA Brief Life



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EpidemiologyEach year nearly 900,000 families are affected by birth tragedies Neonatal mortality rate 4.7 per 1000 live births Infant mortality rate 6.9 per 1000 live birthsCongenital malformations account for 20% of deaths

(Field & Behrman, 2003; Hoyert et al., 2006)


Perinatal Hospice and Palliative Care

The provision of care for a family when a potentially life limiting condition of the fetus is identified in uteroDuality issueGoalsInterdisciplinary team approachTransition


Types of Perinatal Loss

Ectopic pregnancySpontaneous abortion/miscarriageStillbirthNeonatal death Life limiting conditions

AWHONN, 2009



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Stakeholders in Perinatal Palliative Care

Baby, Parents, Siblings, Extended FamilyNursesGeneticists/Genetic counselorsInsurersPerinatologistsPregnancy counselorsSonographersChild birth educatorsMidwives

ObstetriciansLabor and delivery wardsPediatric pharmacistsNeonatal nurse practitionersNeonatologistsPediatriciansHome health agenciesFaith communityFuneral directorsGrief counselors

CENLE Pediatric Palliative CareA Very Empty Nest


Barriers to Perinatal Palliative Care

Barriers in the environment of careFeelings and beliefs of staff/providersFamily expectationsSociety expectationsIssue of hopeFinancial/regulatory barriers



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Ethical Issues in Perinatal Hospice and Palliative Care

AutonomyAdvance Directives


Strategies to Overcome Barriers to Perinatal Palliative Care

Staff trainingAccessEnvironment of care


Strategies to Overcome Barriers to Perinatal Palliative Care (cont.)

Parent educationModel programs



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Perinatal Communication: What Parents Want

KnowledgePreparation AnticipationContinuitySupportRespect


Planning for Perinatal Palliative Care

Create environmentOpen dialogueEducation


Implementing Perinatal Palliative Care Strategies

Establish an interdisciplinary team of inpatient and community-based membersDevelop a process supported by education, policies and proceduresContinuity and support servicesCommunity



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Support During the Pregnancy

Special accommodationsFacilitating attachmentNaming the fetusSpiritual offering


Support During the Pregnancy (cont.)

PresenceCommunication Identify resources to help family members cope during pregnancy


Intrapartum Care

Advance care planning:Birth PlanComfort careInterdisciplinary team meeting



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After the Infant’s Death

Utilization of Birthing Plan Diagnostic testingMemory-makingLactation


Unique Characteristics of Perinatal Bereavement

MourningProblematic social emotionsIsolation and abandonment


Unique Characteristics of Perinatal Bereavement (cont.)

Attachment syndromeTraumaSubsequent pregnanciesDeath of multiples



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Neonatal Palliative Care

Newborns who should receive palliative care:– Newborns at threshold of viability– Newborns with complex or

multiple congenital anomalies – Newborns not responding to

intensive care intervention

CENLE Pediatric Palliative CareLittle Sister


Ethical Issues in Neonatal Palliative Care

Decision-makingFamilies demand “inappropriate care”“Treatment Train”



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Ethical Issues in Neonatal Palliative Care (cont.)

FutilityWithdrawing/withholding treatmentAAP statement on “Resuscitation”


Resolving Ethical Dilemmas

Resolving conflictsCommunicationEducationEthical consultation


Resolving Ethical Issues (cont.)

Parents’ medical record



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Communication: What Parents Want In The NICU

InclusionConcrete evidencePacingRespectPrivacy

McHaffie et al., 2001


Communication Strategies in the NICU

Convey empathySpeak directlyFocus on compassion and prevention of sufferingWait quietlyReview the goalsGuide parents through the processAddress spirituality

Catlin & Carter, 2002


Location of Death for the Neonate

Hospital Home




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Withdrawal of Mechanical Ventilation: Preparation

OrdersTime EducationContingency plansAutopsy and organ/tissue donationMedicationProcess

Catlin & Carter, 2002; Sine et al., 2001


Withdrawal of Mechanical Ventilation: Process

EnvironmentCommunicationTime“Rights of Parents”Rituals

Catlin & Carter, 2002; Munson 2007


The Hands of a Nurse



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When Death Does Not Occur After Cessation of Aggressive Interventions

Where?Who?How?



When Death Does Not Occur After Cessation of Aggressive Interventions (cont.)

Withdrawing and withholding nutrition

Carter & Leuthner, 2003


Unique Features of Neonatal Palliative Care

Extremely long hospitalizationsParent medical record



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The Nurse’s Experience

Moral dilemmasCumulative exposureCoping mechanismsStressGriefNICU environmentLack of education

Kain, 2006

CENLE Pediatric Palliative CareThe End of the Day


The Nurse’s Experience (cont.)

Moral distressConscientious objection to orders

Catlin et al., 2008



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Conclusion

“Neonatal nurses have the potential to play an empowered and pivotal role in supporting the needs of this fragile patient population, their parents, and

their families. The approach to addressing the issues would be best addressed by engaging the

clinical intelligence of neonatal nurses to participate in a collaborative working party to move neonatal

palliative care from a theoretical construct to a recognized and supported model of care.”

Kain et al., 2009

CENLE Pediatric Palliative CareOh, My Child



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