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

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 (n = 8) Postnatal (n = 11)

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

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

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

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

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

www.act.org.uk/carepathways

Stages of palliative care planning British Association of Perinatal Medicine 2010

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 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

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

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

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

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

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