2024 EDITION
Care Around
Stillbirth and
Neonatal Death
Clinical Practice Guideline
2024 EDITION
Care Around
Stillbirth and
Neonatal Death
Clinical Practice Guideline
,Authorship
This guideline was developed by the National Health and Medical Research Council (NHMRC) Centre of
Research Excellence in Stillbirth (Stillbirth CRE) in partnership with the Perinatal Society of Australia and New
Zealand (PSANZ).
Date of publication
This edition of the guideline was published in 2024 and updates and expands on previous editions.1
Copyright statement
Refer to the Stillbirth CRE
Contact
Suggestions and requests for further information or for permission to reproduce material in the text can be
sent to:
Centre of Research Excellence in Stillbirth Mater Research Institute—The University of Queensland
Publication Approval
Suggested citation
Centre of Research Excellence in Stillbirth & Perinatal Society of Australia and New Zealand (2024).
Care Around Stillbirth and Neonatal Death Clinical Practice Guideline.
Funding
The Stillbirth CRE acknowledges the funding provided by the Australian Government Department of
Health and Aged Care for the development of this guideline edition.
Expiry of the guideline
The Stillbirth CRE will monitor new publications and reports that may be relevant to the guideline.
In addition, evidence will be reviewed three years after publication to evaluate whether all or part of the
guideline should be updated. Due to the number of topics in this guideline, a selective updating
approach (based on a living guideline process) may be taken by the Guideline Development Committee
to ensure incorporation of new evidence, rapid update of some
The guideline recommendations on pages 6 to 23 in the Executive Summary were approved by the Chief
Executive Officer of the National Health and Medical Research Council (NHMRC) on 8 December 2023
, under section 14A of the National Health and Medical Research Council Act 1992. In approving the
guideline recommendations, NHMRC considers that they meet the NHMRC standard for clinical practice
guidelines. This approval is valid for a period of five years.
NHMRC is satisfied that the guideline recommendations are systematically derived, based on the
identification and synthesis of the best available scientific evidence, and developed for health
professionals practising in an Australian health care setting.
This publication reflects the views of the authors and not necessarily the views of the Australian Government.
We acknowledge the Traditional Owners of
this land and their ongoing custodianship. We
pay our respects to their Ancestors and their
descendants, who continue cultural and
spiritual connections to Country. We
acknowledge the diversity across Aboriginal
and Torres Strait Islander cultures, language,
and practices and that it is vital that all health
care services respectfully manage protocol
and provide a culturally positive healthcare
experience for Aboriginal and Torres Strait
Islander people when going through Sorry
Business.
"Protection"
We acknowledge and recognise ngā iwi Māori as the Tangata Whenua of
Aotearoa New Zealand. We
acknowledge language, customary practices, and whānau inclusivity. Providing a culturally
acceptable environment by acknowledging all these things by action and deed.
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We know Indigenous people and migrant and refugee families/whānau have a higher risk
of stillbirth in Australia and Aotearoa New Zealand. We also know that these population groups
are resilient, caring, and proud. To reduce the risk of preventable stillbirth and to provide
appropriate care to families/whānau when this devastating event does occur, it is imperative
that all healthcare professionals are respectful and responsive to the cultural needs of these
families/whānau. For
healthcare professionals caring for families following the death of a baby, this provides an
opportunity to strive for better outcomes and be reflective on their own practice. This is
turn can mean families/ whānau feel more satisfied with their care, building up trust and
safety – a crucial element to all aspects of a families/whānau health and wellbeing.
While this is a high quality evidence-based guideline for maternal and newborn services and the
families/whānau in their care, we can also look at it as a story of how to work together in hope,
safety, togetherness, and trust. A commitment to culturally responsive care can help shape this.
When we know better, we do better.
Skye Stewart (Wergaia and Wamba Wamba research midwife)
On behalf of the Guideline Cultural Considerations Expert Working Group
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Forewords
STILLBIRTH CRE AND PSANZ
The Centre of Research Excellence in Stillbirth (Stillbirth CRE) and Perinatal Society of Australia and
New Zealand (PSANZ) are pleased to publish the 2024 update of the Care Around Stillbirth and
Neonatal Death Clinical Practice Guideline. This guideline represents our shared vision to improve
care for parents and families/whānau who experience the tragedy of stillbirth or neonatal death.
The first edition of the guideline was released in 2008 and has been updated four times. As in
previous editions, this edition incorporates the latest evidence for perinatal loss bereavement
care, investigations to understand why a baby died, and audit and classification processes to
inform prevention and improve future care for bereaved families/whānau.
, In this edition, a greater focus has been placed on culturally responsive and safe care practices
and the role of organisations in enabling the provision of best practice care. We also
incorporate two new sections focused on perinatal palliative care and care in subsequent
pregnancies.
While early pregnancy loss (before 20 weeks’ gestation) was not included in the scope of the
guideline, it is important to acknowledge that respectful supportive care for families/whānau
should be the same after any pregnancy loss and that this care should extend into a
subsequent pregnancy. We hope to expand the guideline in the next update to specifically
address the needs of families/whānau experiencing early pregnancy loss.
We acknowledge the enduring loss experienced by parents and families/whānau when the
anticipated joy of bringing a baby home turns to tragedy through pregnancy loss at any
gestation.
We acknowledge and thank the Guideline Development Committee and Expert Working
Groups for their time, and dedication, particularly the Technical Working Group who prepared
this edition.
Prof Vicki
Flenady
Prof
Adrienne
Gordon
Co-Chairs Guideline Development
Committee Stillbirth CRE and
PSANZ
INTRODUCTION 1:
SECTION
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STILLBIRTH FOUNDATION AUSTRALIA
Stillbirth Foundation Australia endorses the 2024 update of the Care Around Stillbirth and
Neonatal Death Clinical Practice Guideline. The death of any baby is a tragedy and Stillbirth
Foundation Australia acknowledges the lasting impact on parents and their families/whānau.
Healthcare professionals have a crucial role in providing care and support for bereaved
families/whānau around the time of a baby’s death and before and during any future pregnancy. This
guideline contains high-quality information and recommendations based on the best available scientific
evidence that will reduce stillbirth and lessen its impact on families/whānau. We strongly encourage
healthcare professionals to read the guideline and implement its recommendations into their clinical
practice. In addition to previous editions, the current guideline has an increased focus on providing
culturally responsive care and the
role of organisations in enabling best practice care and supporting healthcare professional
wellbeing. We welcome the addition of two new and important sections on perinatal
palliative care and care in subsequent pregnancies following perinatal loss.
Stillbirth Foundation Australia is a proud partner of the Centre of Research Excellence in Stillbirth. We
fund researchers to generate new knowledge about stillbirth causes and prevention and translation of
research findings into practice. We also support the community and healthcare professionals through
education
to change behaviours that will help reduce the incidence of stillbirth and support bereaved
families, and extend the reach and impact of the stillbirth community by advocating on behalf of
bereaved families. Stillbirth Foundation Australia provides an opportunity for parents to share
their stories about their beloved babies who were stillborn.
Stillbirth Foundation Australia, in partnership with the Centre of Research Excellence in
Stillbirth, developed the Guiding Conversations booklet that is included in this guideline
(Section 1.4). We hope that healthcare professionals will use this parent version of the
guideline to support parents and families/ whānau during this devastating time.
Our thoughts are with all families/whānau who are missing their beloved babies - they are forever
loved and in our hearts. We also acknowledge and thank all healthcare professionals who care for and
support bereaved families/whānau during and after stillbirth.
A/Prof Sean Seeho
Chair, Stillbirth Foundation Australia
PINK ELEPHANTS SUPPORT NETWORK
, The Pink Elephants Support Network is Australia’s leading early pregnancy loss support
charity, providing up-to-date resources such as information for bereaved parents, their families
and friends, and their workplaces, and a range of peer support options for anyone impacted by
the emotional, physical, and mental health effects of early pregnancy loss.
Early pregnancy loss, or miscarriage, is often fraught with unknowns, silence, shame and
stigma. Pink Elephants welcomes this guideline, which we believe will improve care for all
women and families following pregnancy loss, regardless of gestation. As an organisation that
provides early intervention support to bereaved parents who lose a baby during the first 20
weeks of pregnancy, we know how important it
is that all losses are met with the same validation, empathy, and referral for support. We
welcome the plans to extend this guideline to address the specific needs of women and
families who experience early pregnancy loss.
Sam Payne
CEO, Pink Elephants Support Network
INTRODUCTION 1:
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RED NOSE AUSTRALIA
The death of a baby is a devastating experience for parents, their families and support people.
Healthcare professionals play such an important role in caring and supporting bereaved
families in the immediate days, weeks and months following the death of a baby.
Red Nose is a proud partner of the Centre of Research Excellence in Stillbirth. We welcome
this edition of the Care Around Stillbirth and Neonatal Death Clinical Practice Guideline and its
expanded focus on culturally responsive care, perinatal palliative care, and care in subsequent
pregnancies.
We will continue to support implementation across Australia to ensure all families receive high
quality support throughout the continuum of care.
Red Nose have supported grieving families in Australia for more than 40 years. We have worked
together with healthcare professionals and hospitals to provide bereavement resources and
supports across the grief journey including providing 24/7 bereavement support, professional
counselling, the Hospital to Home program, a full range of peer support programs and our
Treasured Babies Program. All programs aim to support families as they navigate the complex
loss experience following the death of a baby, including in subsequent pregnancies.
We extend our warmest condolences to all families who are missing their little ones. We also
acknowledge and support all healthcare professionals who care for bereaved families during
this devastating time.
Keren Ludski
Red Nose
MIRACLE BABIES FOUNDATION
, Having a premature or critically ill baby that requires specialised medical care in a neonatal
unit can be a traumatic and emotional experience. Heartbreakingly, sometimes babies will
pass away despite the highest level of intensive care. For these bereaved families, the
journey is life long and can be life changing. It is extremely beneficial for bereaved parents
to connect with other parents with a shared experience of their baby passing away in the
neonatal unit. This can help reduce the isolation and loneliness whilst building supportive
communities and connections.
Miracle Babies Foundation is Australia’s leading not for profit supporting premature and sick
babies and their families, including bereaved families. For almost twenty years, Miracle
Babies has developed and delivered peer support services and resources through all parts of
the neonatal journey, the transition to home and beyond.
Making memories and being involved in their baby’s clinical and palliative care is very
important for parents. We thank all health care professionals caring for these miracle babies
and their families at this time.
Our sincere thoughts are with each family at the passing of their baby and through the years ahead.
Kylie Pussell
Miracle Babies Foundation
CASAND GUIDELINE
The 2024 edition of the Care Around Stillbirth and Neonatal
Death Clinical Practice Guideline
Contents
SECTIO N 1 :
INTRODUCTION
Appendix 1A: Membership of the Guideline Development Committee and Expert
Working Groups Appendix 1B: Future directions
, Appendix 1C: Plain language brief summary
SECTIO N 2 : APPROAC H TO
CARE
• ..............................................................................................................................Background and
objective ..................................................................................................................................................... 2
• ..............................................................................................................................Framework for
care around stillbirth and neonatal death ................................................................................................. 3
• ..............................................................................................................................Approach to care
4
Caring for parents around termination of pregnancy for medical
reasons
..........................................................................................................................................
5
• ..............................................................................................................................Social and
emotional support for perinatal grief ............................................................................................... 7
Mental health
considerations
..........................................................................................................................................
9
Other
considerations
..........................................................................................................................................
11
• ............................................................................................................................ Provision of
culturally responsive care............................................................................................................. 12
• ............................................................................................................................ References
16
SECTIO N 3 : PERINATA L LOS S
CARE
• ............................................................................................................................... Background
and objective .............................................................................................................................................. 2
• ............................................................................................................................... Breaking bad
news ............................................................................................................................................. 3
• ............................................................................................................................... Care planning
and decision making ...................................................................................................................... 5
• ............................................................................................................................... Labour and
birth............................................................................................................................................... 7
• ............................................................................................................................... Memory making
and spending time with baby .......................................................................................................... 9
Collection and creation of mementos ...............................................................................11
Commemorative rituals................................................................................................... 13
• ............................................................................................................................... Postnatal care
and physical recovery .................................................................................................................. 14
Lactation after loss ......................................................................................................... 14
