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Care Around Stillbirth and Neonatal Death (CASaND) Clinical Practice Guideline

Introduction

The death of a baby during pregnancy or soon after birth has long-lasting social and emotional consequences.3 There are also ongoing impacts on healthcare professionals who care for parents around the time of loss,4 and economic impacts on health systems and society.5-7 The quality of care that parents and family/whānau receive around the time their baby dies, including care following diagnosis of a life-limiting condition and termination of pregnancy, is a major contributor to immediate and long-term wellbeing, including into subsequent pregnancies.3,4  

Globally, more than 4 million babies die during the perinatal period each year.8 Stillbirths represent the majority of these deaths and have been identified as an unaddressed global public health problem due to little or no improvement in the rates of these deaths and inadequate perinatal loss care for those who experience this loss.9,10 While the global burden of perinatal death lies in low and middle-income countries, high-income countries have substantial room for improvement.11 The Lancet stillbirth series in 2016 set out a comprehensive call to action to address stillbirth12 including priorities for high-income countries. 11

In Australia and Aotearoa New Zealand late gestation stillbirth rates (28 weeks or more) are approximately 26% and 37% higher respectively than other high-income countries with the lowest rates.13 Further, First Nations peoples, some migrant and refugee communities14 and those living in rural and remote regions and other areas of disadvantage15-17 experience up to double the rates.

In 2021 the perinatal mortality rate in Australia was 9.9 perinatal deaths for every 1,000 births representing 2,272 stillbirths and 642 neonatal deaths18 and in 2020 the rate in Aotearoa New Zealand was 10.8 per 1,000 births representing 489 stillbirths and 153 neonatal deaths.19

Identifying the causes of stillbirth and neonatal (perinatal) death through appropriate diagnostic investigations is an essential component of quality care for parents and families/whānau. Parents need the best possible information to help them understand why their baby died and to guide care in subsequent pregnancies.20,21 Accurate information on the cause of death is also necessary to inform effective prevention strategies.11 Congenital anomalies account for around one-third of perinatal deaths in Australia and Aotearoa New Zealand,18,19 often following termination of pregnancy. With low autopsy rates in many jurisdictions, many stillbirths are not adequately investigated, and valuable information may be lost. Contributing factors relating to care (also called sub-optimal, avoidable, or preventable factors) have been reported in 30 to 50% of perinatal deaths with lack of appropriate care for women with risk factors a common finding.22-25 The Safer Baby Bundle has been implemented across Australia to address this gap.

The first edition of the guideline was released in 2008 and updated four times. In this edition, a greater focus has been placed on culturally appropriate care, perinatal palliative care and care for families/whānau experiencing a perinatal death following a termination of pregnancy. Care for families/whānau who experience an early pregnancy loss was beyond the scope of this guideline and we plan to include this in future updates. However, we acknowledge the burden on families/whānau of all pregnancy loss no matter when it occurs and hope that this guideline will assist in better care and outcomes for families/whānau after early loss across maternity care settings.

The IMPROVE (IMproving Review and Outcomes Via Education) Program first developed in 2008 was designed to implement the guideline into everyday care. The program includes a new e-learning module26 including the Guiding Conversations booklet for parents and families and the Jiba Pepeny booklet for Aboriginal and Torres Strait Islander parents and families.

The National Stillbirth Action and Implementation Plan (The Plan) in Australia27 has identified improving care after stillbirth, with specific focus on the needs of priority populations, as a priority. The first report of the Ending Preventable Stillbirths (EPS) Scorecard for High- and Upper Middle-Income Countries (released in 2023) highlighted the progress in Australia associated with the establishment of the Stillbirth CRE and The Plan. However, substantial room for improvement was identified, particularly in addressing the persistent disparity in care and outcomes for First Nations peoples and other disadvantaged communities, including in Australia and Aotearoa New Zealand.28

This guideline has been updated as part of the national plan to provide individual healthcare professionals and the maternal and newborn services in which they work with best practice recommendations to enable optimal care for parents who experience the loss of a baby in the perinatal period, no matter where they live or their cultural and religious background.

CASaND Guideline
Acknowledgment of Country and Forewords
Stillbirth Logo
Western Pacific Regional Office of the International Stillbirth Alliance
Coordinating Centre, Stillbirth and Neonatal Death Alliance, Perinatal Society of Australia and New Zealand

Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine

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