Module 2: Perinatal and Neonatal Palliative Care C C E E N N L L E E End-of-Life Nursing Education Consortium Pediatric Palliative Care C C E E N N L L

Module 2:Perinatal and Neonatal Palliative Care

CCEENNLLEEEnd-of-Life Nursing Education Consortium

Pediatric Palliative Care

CCEENNLLEE Pediatric Palliative Care


Perinatal and Neonatal Palliative Care

Comprehensive care in a variety of settings

Best Practice Models of perinatal and neonatal programs

RTS Program


History of Neonatal Intensive Care

1950’s- 1960’s: NICU

development Paternalism in decision making 1973: Duff & Campbell 1982: Influence of Baby Doe

Case


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 Pediatrics NHPCO – National Hospice and Palliative

Care Organization AWHONN – Association of Women’s

Health Obstetric and Neonatal Nurses

CCEENNLLEE Pediatric Palliative CareA Brief Life


Epidemiology

Each year nearly 900,000 families are affected by birth tragedies

Neonatal mortality rate 4.2 per 1000 live births

Infant mortality rate 6.42 per 1000 live births

Congenital malformations account for 20% of deaths

Field & Behrman, 2003; Hoyert et al., 2006, US Dept. of HHS, 2011


Perinatal Hospice and Palliative Care

The provision of care for a family when a potentially life limiting condition of the fetus is identified in utero.

Duality issue Goals Interdisciplinary team approach Transition


Types of Perinatal Loss

Ectopic pregnancy Spontaneous

abortion/miscarriage Stillbirth Neonatal death Life limiting conditions

AWHONN, 2009


Stakeholders in Perinatal Palliative Care

Baby, Parents, Siblings, Extended Family

Nurses Geneticists/Genetic

counselors Insurers Perinatologists Pregnancy counselors Sonographers Child birth educators Midwives

Obstetricians Labor and delivery wards Pediatric pharmacists Neonatal nurse

practitioners Neonatologists Pediatricians Home health agencies Faith community Funeral directors Grief counselors

CCEENNLLEE Pediatric Palliative CareA Very Empty Nest


Implementing Perinatal Palliative Care Strategies

Establish an interdisciplinary team of inpatient and community based members

Develop a process supported by education, policies and procedures

Continuity and support services Community


Barriers to Perinatal Palliative Care

Barriers in the environment of care Feelings and beliefs of

staff/providers Family expectations Society expectations Issue of hope Financial/regulatory barriers


Strategies to Overcome Barriers to Perinatal Palliative Care

Staff training Access Environment of care Parent education Model programs


Perinatal Communication: What Parents Want

Knowledge Preparation Anticipation Continuity Support Respect


Planning for Perinatal Palliative Care

Create enviroment Open dialogue Education


Support During the Pregnancy

Special accommodations Facilitating attachment Naming the fetus Spiritual offering


Support During the Pregnancy (cont)

Presence Communication Identify resources to help family

members cope during pregnancy


Intrapartum Care

Advance care planning: Birth Plan

Comfort care Interdisciplinary team meeting


After the Infant’s Death

Utilization of Birthing Plan Diagnostic testing Memory-making Lactation


Unique Characteristics of Perinatal Bereavement

Mourning Problematic social emotions Isolation and abandonment Disenfranchised grief


Unique Characteristics of Perinatal Bereavement (cont.)

Attachment syndrome Trauma Subsequent pregnancies Death of multiples


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

CCEENNLLEE Pediatric Palliative CareLittle Sister


Communication: What Parents Want In The NICU

Inclusion Concrete evidence Pacing Respect Privacy

McHaffie et al., 2001


Communication Strategies in the NICU

Convey empathy Speak directly Focus on compassion and prevention of

suffering Wait quietly Review the goals Guide parents through the process Address spirituality

Catlin & Carter, 2002


Ethical Issues in Neonatal Palliative Care

Decision-making Families demand “inappropriate

care” “Treatment Train”


Ethical Issues in Neonatal Palliative Care (cont.)

Futility Withdrawing/withholding treatment AAP statement on “Resuscitation”


Resolving Ethical Dilemmas

Resolving conflicts Communication Education Ethical consultation


Location of Death for the Neonate

Hospital Home Encourage parents to “parent’

their infant



Withdrawal of Mechanical Ventilation: Preparation

Orders Time Education Contingency plans Autopsy and organ/tissue donation Medication Process Catlin & Carter, 2002; Sine et al., 2001


Withdrawal of Mechanical Ventilation: Process

Environment Communication Time

Catlin & Carter, 2002; Munson, 2007


“Rights of Parents”

Rituals

Catlin & Carter, 2002; Munson, 2007


When Dying Is Prolonged: Caring for the Neonate Beyond the First Few Hours

What to do What to say Preparing family for

alternatives



Continued Nutrition & Hydration

Withdrawing vs. withholding nutrition

Carter & Leuthner, 2003


Unique Features of Neonatal Palliative Care

Extremely long hospitalizations Parent medical record


Nursing Experience with the Dying Infant

Death as a failure Stress Coping skills/emotional protection Empowered to support

Kain, 2006, 2009

CCEENNLLEE Pediatric Palliative CareThe End of the Day


The Nurse’s Experience (cont.)

Moral distress Conscientious objection to

orders

Catlin et al., 2008

CCEENNLLEE Pediatric Palliative CareOh, My Child

Documents

Module 2: Perinatal and Neonatal Palliative Care C C E E N N L L E E End-of-Life Nursing Education Consortium Pediatric Palliative Care C C E E N N L L