The limits of viability: A national consensus document Malcolm Battin*

Survival Inborn Babies by Birth Weight Cambridge – vent cohort (green>1kg) Cambridge < 1kg & vent cohorts UCH London UK

Perinatal care at the borderlines of viability: consensus workshop Grey Zone between 230 and 256 weeks Parental wishes Condition at birth & anomalies Withdraw of intensive care in grey zone is influenced by neurological complications Med J Aust. 2006 6;185(9):495-500

Perinatal care at the borderlines of viability: consensus workshop Grey Zone between 230 and 256 weeks Parental wishes Condition at birth & anomalies Withdraw of intensive care in grey zone is influenced by neurological complications Med J Aust. 2006 6;185(9):495-500

Survival of admitted infants Author Date published Site Total Livebirths 22 weeks 23 weeks De Waal (2012) Netherlands 345 - EPIPAGE 1 (2004) France Markstad (2005) Norway 182 26% Field (2008) Trent 669 18% Bolisetty (2004) NSW & ACT 355 50% EPIBEL (2005) Belgium 525 6% EPICure (1995) England 811 9% 20% EPICure (2012) 2034 16% 30% EXPRESS (2009) Sweden 501 10% 53% Itibashi (2009) Japan 1303 34% 54%

ACR 2015 – A Gill commentry

Thoughts from the famous … “To understand God's thoughts we must study [the] statistics, for these are the measure of his purpose.” Florence Nightingale

Survival of 24 Week Infants Clear difference in the survival of extreme prems between outborn and inborn infants which is reflected in the perception of the staff Overall perception is that 24 weekers have poor survival rates (more so if born outside a tertiary centre) Note the optimistic outlier from the tertiary centre! Midwives tend to be the most optimistic Boland ANZJOG 2016

Counselling Survival Relevant local data Population data Vs individual Births Vs NICU admissions Appropriate for clinical situation Population data Vs individual

ANZNN survival to discharge (2016)

Prediction of individual outcome Congenital anomalies Antenatal steroids Sex Optimal growth Multiple gestation Infection or asphyxia Condition at birth ? Apgar scores?

Counselling Survival Quality of survival Relevant local data Births Vs NICU admissions Appropriate for clinical situation Population data Vs individual Quality of survival Short term morbidity Long term morbidity

ANZNN data: IVH

ANZNN 2010-2013 Neurodevelopmental outcomes <24 24 25 26 27 > = 28 CP (%) 11.2 12.5 8.3 7.0 3.6 4.0 No cognitive delay (%) 70.7 80.4 84.6 86.3 87.8 87.9 No language delay (%) 61.3 64.0 69.4 75.0 77 71.4 No motor delay (%) 71.8 74.2 78.9 85.8 82.8 Severe functional deficit (%) 11.4 7.5 5.6 5.2 3.2 3.5

National Guideline Informed by good quality data Starting point of quality care Ensure babies transferred appropriately & timely Equity of access Facilitate good counselling by experts Clear plan across multidisciplinary groups Include parental wishes

National Guideline

National Guideline

Who was involved ? Paediatric Society & Perinatal Society of New Zealand RACP (Paediatrics) & RANZCOG NZCOM & College of Nurses Aotearoa New Zealand Maternal Fetal Medicine Network University of Otago Bioethics Centre Consumer groups - Sands & Neonatal Trust Feedback from: New Zealand College of General Practitioners National Maternity Monitoring Group & PMMRC TeOra Māori Medical Practitioner Association Maternity Quality and Safety Consumer Committee Health and Disability Commissioner

Communication Support people Trained interpreter Ensure privacy Acknowledge cultural & religious beliefs Experienced O&G, Paediatrics, M/W Check list and clearly document decisions

Shared decision making Review all information Consider individual circumstances GA, estimated weight, multiple gestation, anomalies, infection, maternal factors < 23/40 active support not recommended ≥ 23+0/40 intervention dependent on individual circumstances

Decision Support

Comfort / Palliative care Consistent with family/whanau wishes Take time and review plan as needed Pain and symptom management Avoid unnecessary interventions Counsel regarding signs of life Facilitate memory creation Provide cultural / spiritual support

Practice point Considering active transfer from 22+5 wks allows time for: antenatal corticosteroids magnesium sulphate infusion arrival at tertiary centre prior 23+0 wks Decision to provide active NICU care can be reviewed if situation or family wishes change

Standardized approach An opportunity to develop formal 23/24 week bundle of care: Surfactant & ventilation strategies Skin care PDA management, fluid balance and TPN Strategies on prevention of infection and NEC e.g. fungal prophylaxis, probiotics, lactoferrin Breast milk bank

Final points A comprehensive strategy for care < 24 wks will potentially have benefit > 24 weeks Opportunity to develop bundle of care Implementation strategy for document Need for ongoing education Approach based on current evidence Interdisciplinary communication important