dr ross drake paediatric palliative care specialist starship children’s hospital
TRANSCRIPT
PERINATAL PALLIATIVE CARE
Dr Ross Drake
Paediatric Palliative Care Specialist
Starship Children’s Hospital
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
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 conditions1. ante- or postnatal diagnosis not compatible with long term
survival i.e. bilateral renal agenesis, anencephaly
2. ante- or postnatal diagnosis with high risk of significant morbidity or death
i.e. severe bilateral hydronephrosis & impaired renal function
Decision-making
3. certainty of diagnosis
4. certainty of prognosis
5. meaning of the prognosis to the parents
Suggestion
clear cut antenatal diagnosisdiscuss both palliative & termination options
with parents
unclear antenatal diagnosis with prognostic uncertaintypalliative care remains an option as it does
not preclude intervention/resuscitationall in the planning
Parental decisions
studied after prenatal diagnosis of lethal fetal abnormality in 20 pregnancies40% of parents chose to continue & pursue
perinatal palliative care6 babies (75%) live born & lived between 1½ h
& 3 wk
Breeze et al. Arch Dis Child Fetal Neonatal Ed 2007; 92
Postnatal conditions1. babies born at margins of viability & ICU inappropriate
2. postnatal conditions with high risk of severe impairment of quality of life & baby receiving or requiring life support
i.e. severe hypoxic ischemic encephalopathy
3. postnatal conditions where baby experiencing “unbearable suffering” i.e. severe necrotizing enterocolitis where palliative care is in baby’s best
interests
Decision-making
4. requires accurate diagnosis & prognosis prognosis not always certain
5. often needs agreement within neonatal team different perspectives on “quality of life” & “unbearable suffering”
6. good communication with family consistent senior person
NICU studies
Pierucci et al. Pediatrics 2001;108 Steven et al. J Pall Med 2001;4
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
General care
A. Family care
psychological support
creating memories spiritual or personal
beliefs financial & social
support
B. Communication & Documentation
C. Flexible parallel care planning
General planning
A to Cmulti-disciplinary discussion amongst
obstetric & neonatal teamgood communication with local team incl. GP
esp. if delivery elsewherenamed co-ordinator of care
PPC team can provide 3 levels of supportnot required support for health professionalsdirect support of family
Pre birth care
routine antenatal care alert system intrapartum care plan delivery & Caesarean section
place of deliverystaff at deliveryresuscitation at delivery
Decision-making in delivery room
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
Postnatal care plan
transition from active to palliative carecan be gradual to evaluate babies progress
supportive carephysical comfort caresymptom management i.e. pain, distress,
agitationnutrition & feedinginvestigations, monitoring & treatmentresuscitation plans
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
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