Perinatal Palliative Care

1. 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 • 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

9. www.act.org.uk/carepathways

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 • 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 • 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