Application of this guideline

The purpose of this guideline is to promote best practice across Australia and Aotearoa New Zealand around the time a baby dies. Maternal and newborn care settings are the primary focus, as well as interfaces between hospital-based services and the community, and the longer-term support needs of parents and families/whānau.²⁹ 

Scope

This clinical practice guideline provides guidance to frontline healthcare professionals in maternal and newborn services in Australia and Aotearoa New Zealand, including primary care, obstetric and midwifery practice, and public and private hospitals, who provide care to parents and families/whānau around the time of perinatal death.

For this guideline, perinatal death is defined as follows.

• Stillbirth: birth following the death of an unborn baby of 20 or more completed weeks of gestation or of 400 g or more birthweight. It is acknowledged that countries and organisations may use definitions that differ from this. Definitions of stillbirth using limits >20 weeks gestational age, OR >400 g weight at birth OR where the term ‘stillbirth’ is used to describe the birth outcomes were accepted for inclusion.^19,30
• Neonatal death: a live born baby who dies within 28 days of life (regardless of gestation or weight at birth). For statistical purposes, the definition applied is the death of a live born baby of 20 or more completed weeks of gestation or of 400 g or more birthweight, within 28 days of birth. Early neonatal death is the death of a live born baby within 1–7 days of birth. Late neonatal death is the death of a live born baby within 8–28 days of birth.^19,30

The definition of stillbirths and neonatal deaths includes the death of a baby following a termination of pregnancy of 20 or more completed weeks of gestation or of 400 g or more birthweight.

The guideline does not specifically address or provide best practice recommendations for the care of parents who experience early pregnancy loss/miscarriage (including ectopic or molar pregnancy). In Australia, Miscarriage Australia and Pink Elephants Support Network provide tailored information and support. In Aotearoa New Zealand, Miscarriage Support and Miscarriage Matters provide online resources and best practice recommendations.

Target audience

Primary audience: This guideline is for all healthcare professionals who care for parents and families/whānau in maternal and newborn care services in Australia and Aotearoa New Zealand. This may include doctors, midwives, nurses, social workers, psychologists, Aboriginal and Torres Strait Islander health workers and practitioners as well as Aboriginal liaison officers, and community-based healthcare professionals including community first responder organisations (e.g. ambulance services). This guideline is also for healthcare professionals who care for families/whānau in the transition from hospital to community and provide longer-term ongoing support. Other healthcare professionals such as sonographers, pathologists, and radiologists may also find this guideline helpful in identifying the cause of a baby’s death. Healthcare professionals will apply this guideline according to their knowledge, skills, and role, as well as the geographical and cultural setting in which they provide care. Strong multidisciplinary partnerships are essential to ensure optimal care for parents and families/whānau.

Secondary audience: The guideline may also be used by policy makers, health system administrators, and others involved in implementation of maternal, newborn and child health programs. In addition, the guideline may be useful for parents, families/whānau and their support people, including those who have been affected by stillbirth or neonatal death and/or are involved in advocacy related to maternal and newborn health.

A note about terminology

This guideline uses parent-centred language that is intended to be inclusive of all affected by loss. We use the term ‘woman’ throughout the guideline to refer to the person who is pregnant and gives birth.³¹ We acknowledge diverse gender identities and that not all individuals who become pregnant and give birth identify as a woman. The term ‘parent’ is used to refer to expectant and bereaved mothers, fathers, and partners. It is important to recognise individuals who identify themselves as parents. However, we also acknowledge that not all individuals who experience perinatal loss consider themselves to be parents.³²

This guideline uses ‘baby’ when referring to stillbirth, neonatal death because these terms are preferred by many bereaved parents. Terms such as ‘fetus’ may add to parents’ distress because this language denies personhood³³ and is inconsistent with recognition of parenthood that is crucial to providing respectful and supportive care. This guideline uses ‘healthcare professional’ to denote all those working with bereaved parents and family/whānau (see Glossary).

A note about the evidence

Four Cochrane reviews that have addressed aspects of care after perinatal death found limited trial evidence to support clinical practice.^20,34-36 The review assessing the effectiveness of interventions intended to provide psychological support or counselling to mothers, fathers or families/whānau after perinatal loss, found no eligible randomised controlled trials (RCTs).³⁴ The review on approaches to investigations for stillbirth also found no RCTs.²⁰ The reviews on subsequent pregnancy care³⁶and autopsy consent found very limited evidence from RCTs.³⁵ The review authors acknowledge the challenge of conducting experimental study designs in this area and the need to rely on non-randomised and observational studies to guide practice.

There is a growing body of qualitative and non-randomised evidence with consistent findings, which helps to inform best practice care around stillbirth and neonatal death. We have drawn on this body of research evidence and the insights from an experienced multidisciplinary team as part of the Development Committee and its specialised subcommittees in developing the recommendations in this guideline. Further, when cross referencing our findings against all relevant international guidelines we found consistency in interpretation of the evidence and recommendations.

Many recommendations are consensus-based drawing on the available literature and expert knowledge and experience of the committee members and the wider audience through public consultation. For many of the evidence-based recommendations the evidence was rated as low to moderate quality. The recommendations have been developed so that maternal and newborn services can strive to meet best practice care to improve outcomes for families around the time of stillbirth or neonatal death.

Acknowledgements

This edition of the clinical practice guideline was produced by a multidisciplinary working group led by the Centre of Research Excellence in Stillbirth (Stillbirth CRE) based at Mater Research Institute–The University of Queensland, Brisbane, Australia in partnership with the Perinatal Society of Australia and New Zealand (PSANZ). Support for guideline development was received from the Australian Government Department of Health and Aged Care. See Appendix 1A for membership of the Guideline Development Committee and Expert Working Groups.