1. Perinatal Palliative Care
Dr Ross Drake
Paediatric Palliative Care Specialist
Starship Children’s Hospital
Perinatal Palliative Care

2. Definition
Palliative care is an active & total approach to care, embracing physical, emotional, social & spiritual elements.
It focuses on enhancement of quality of life for the infant/child & support for the whole family & includes the management of distressing symptoms, provision of respite & care from diagnosis through death & bereavement.
The Association for Children's Palliative Care &
the Royal College of Paediatrics & Child Health 1993

3. Starship data – 2 yrs Prenatal (n = 8) Postnatal (n = 11)
6 male, 2 female
ethnicity
5 NZ Euro, 1 Maori, 2 Pacific
diagnosis
4 neurology (brain reduction syndromes)
3 cardiac
1 renal
survival (75% died)
4 < 1 day
2 at 1 wk to < 1 mo
2 alive (9 & 11 mo – cardiac)
6 male, 5 female
ethnicity
6 NZ Euro, 2 Maori, 3 Pacific
diagnosis
6 genetic (2 x metabolic, EB, chromosomal)
3 neurology
2 cardiac
survival (64% died)
1 < 1 mo
5 at 1 mo to < 1 yr
1 > 1 yr
4 alive (8, 13, 21, 22 mo)
Prenatal (n = 8)
Postnatal (n = 11)

4. Prenatal conditions
ante- or postnatal diagnosis not compatible with long term survival
i.e. bilateral renal agenesis, anencephaly
ante- or postnatal diagnosis with high risk of significant morbidity or death
i.e. severe bilateral hydronephrosis & impaired renal function
Decision-making
certainty of diagnosis
certainty of prognosis
meaning of the prognosis to the parents

5. Suggestion clear cut antenatal diagnosis
discuss both palliative & termination options with parents
unclear antenatal diagnosis with prognostic uncertainty
palliative care remains an option as it does not preclude intervention/resuscitation
all in the planning

6. Parental decisions
studied after prenatal diagnosis of lethal fetal abnormality in 20 pregnancies
40% of parents chose to continue & pursue perinatal palliative care
6 babies (75%) live born & lived between 1½ h & 3 wk
Breeze et al. Arch Dis Child Fetal Neonatal Ed 2007; 92

7. Postnatal conditions
babies born at margins of viability & ICU inappropriate
postnatal conditions with high risk of severe impairment of quality of life & baby receiving or requiring life support
i.e. severe hypoxic ischemic encephalopathy
postnatal conditions where baby experiencing “unbearable suffering”
i.e. severe necrotizing enterocolitis where palliative care is in baby’s best interests
Decision-making
requires accurate diagnosis & prognosis
prognosis not always certain
often needs agreement within neonatal team
different perspectives on “quality of life” & “unbearable suffering”
good communication with family
consistent senior person

8. NICU studies 196 deaths over 4 yr
25 (13%) palliative care consultations
rate increased from 5% to 38%
infants receiving PC had fewer days in ICU & interventions incl. CPR
families referred more frequently for chaplain & social services
51 deaths (898 admissions)
12 (24%) palliative care consultations
reason for consults
organize home/hospice care
facilitation of medical options
facilitation of comfort measures
grief/loss issues
recommendations
advance directive planning
optimal environment for supporting neonatal death
comfort & medical care
psychosocial support
Pierucci et al. Pediatrics 2001;108
Steven et al. J Pall Med 2001;4

10. Stages of palliative care planning
British Association of Perinatal Medicine 2010

11. General care A. Family care psychological support creating memories
spiritual or personal beliefs
financial & social support
B. Communication & Documentation
C. Flexible parallel care planning

12. General planning A to C PPC team can provide 3 levels of support
multi-disciplinary discussion amongst obstetric & neonatal team
good communication with local team incl. GP esp. if delivery elsewhere
named co-ordinator of care
PPC team can provide 3 levels of support
not required
support for health professionals
direct support of family

13. Pre birth care routine antenatal care alert system
intrapartum care plan
delivery & Caesarean section
place of delivery
staff at delivery
resuscitation at delivery

14. Decision-making in delivery room after live birth
information available
uncertainty of prognosis
after live birth
infants condition evolves (flexible care plan)
family values
meaning of outcome for the child within the family
after a trial of treatment
maybe offered in cases of poor but uncertain prognosis
dynamic process
reassess frequently

15. Postnatal care plan transition from active to palliative care
can be gradual to evaluate babies progress
supportive care
physical comfort care
symptom management i.e. pain, distress, agitation
nutrition & feeding
investigations, monitoring & treatment
resuscitation plans

16. End of life care plan place of care staff leading end of life care
transition to end of life care
physical changes in appearance
post mortem (if required)
organ donation

17. Post death care confirmation of death & certification registration
requirements of live born & still born
taking baby home after death in hospital
funeral arrangements
communication & follow-up
staff support

18. Summary involved in prenatal & early in postnatal
work along side obstetric &/or NICU team
advice &/or support for different aspects of management
assist with transfer home
support primary care & community services
after care