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

Approach to care

The quality of care that parents and family/whānau receive can have immediate and long-lasting consequences and extend into subsequent pregnancies and beyond.3,4 Respectful, supportive and culturally responsive care should be provided to all parents and family/whānau who experience perinatal loss, regardless of whether the loss occurs during pregnancy or after birth. Optimal perinatal loss care is based on the needs of parents rather than the type of loss.11

Best practice care around stillbirth and neonatal death should encompass a continuum of care and incorporate planning and parent-centred decision making. Where possible, parents should be cared for by a multidisciplinary team of healthcare professionals.12 This may vary across the continuum of care, depending on the purpose, and can include a bereavement midwife, lead maternity carer (community-based midwife), lead healthcare professional, general practitioner, cultural, religious or spiritual advisors, bereavement counsellor,13 as well as sonographers, radiologists,14 and other healthcare professionals.

Healthcare professionals play a central role across the continuum of care from the moment of bad news, through birth and postpartum, and into future pregnancies.6

An individualised parent-centred approach to care planning validates the experiences of parents and family/whānau. This facilitates a seamless transition across the continuum of care, from diagnosis through to discharge and follow-up and any subsequent pregnancy.3 Care is individualised and supportive when it responds to the needs, preferences, circumstances, and cultural context of bereaved parents and family/whānau.15,16

Consensus-based recommendation 2.1

A multidisciplinary team should oversee care across the continuum from diagnosis through birth and death planning to transition from hospital to community. The team should:

  • provide continuity of care and carer
  • hold regular meetings with parents and family/whānau
  • ensure medical records include a care plan (for example a perinatal palliative care plan) that has been developed with the parents and the plan is accessible to all team members, parents and family/whānau
  • consider supports that may be required to meet the cultural, religious, and/or spiritual needs of parents and family/whānau
  • engage other relevant healthcare workers and interpreters, where needed.

Consensus-based recommendation 2.2

To ensure continuity of carer, designate a lead contact person with training in perinatal loss care, ideally a bereavement midwife to be a known point of contact for parents, family/whānau and other members of the care team (including hospital volunteers).

Consensus-based recommendation 2.3

Use an identifier in medical records to show there is a perinatal loss care plan in place outlining parents’ values, preferences, and wishes for care and support.

  • Ensure care plans are accessible to all members of the multidisciplinary team and available to parents and family/whānau.

Evidence-based recommendation 2.4

Evidence quality: moderate confidence

Use respectful and sensitive language and terminology that is honest, realistic, and understandable.

  • Take the lead from parents regarding preferred language for their baby.
  • Use the word ‘baby’ or ‘bub’ if acceptable to parents.
  • Ask parents if they have named their baby and, if so, seek permission to use the name.

Evidence-based recommendation 2.5

Evidence quality: moderate confidence

Be aware that stress and grief can greatly affect how people absorb, retain, and respond to information. Tailor information by:

  • using open-ended questions
  • repeating information and checking with parents that they understand
  • offering parents culturally and linguistically appropriate parent-facing information and resources about perinatal grief and what to expect
  • allowing parents time and space to read information and resources when they are ready.

Caring for parents around termination of pregnancy for medical reasons

In this guideline, termination of pregnancy for medical reasons specifically refers to the experience of parents who have made the decision to have a termination of pregnancy (from 20 weeks gestational age) because of a diagnosis of an anomaly in the baby following scan findings or other antenatal test results or due to a life-threatening condition for the woman.17 Care up to this point (including investigations, diagnosis, and the decision to terminate the pregnancy) is outside the scope of this guideline; however, we would expect that parents have received respectful high quality care and access to accurate and balanced information and support as needed to make their decision.17

Through the Unexpected is an Australian charity providing information and social and emotional resources to expectant parents and families faced with an antenatal diagnosis of an anomaly in their baby.

It is important that healthcare professionals recognise the profound emotional impact and intense shock and grief experienced by parents when an anomaly in the baby is detected, with the need to then provide parents with clear and comprehensive information on anomalies, prognosis and future care plans.18

While the decisions faced by parents will vary according to the baby’s diagnosis, all parents will require information and non-judgmental support.19 Expressing understanding, and normalising and validating parents’ decisions is critical.18,20

Disenfranchised grief, societal stigma, and feelings of shame and guilt are commonly reported by parents following perinatal loss and these may be even more pronounced for parents who have made the decision to terminate a pregnancy for medical reasons.21,22 This can greatly affect parents’ coping and decision making around care planning. Some parents may decide not to tell family/whānau and/or friends due to personal, cultural, religious, and/or spiritual reasons and/or fear of being judged for their decision. The emotional complexity around termination of pregnancy for medical reasons, labour and birth, and memory making requires individualised care that is nonjudgmental, empathetic, and supportive.

“When making the decision to end my baby’s life the biggest judgment I felt was not loving my baby enough when in fact the decision to suffer and carry this burden myself was to save and love my baby.”

Bereaved mother, Australia, 2023

It is important for healthcare professionals to acknowledge the difficulties faced by parents who are planning a termination for a wanted baby.

It is crucial that all discussions are carefully documented to ensure parents’ views are acknowledged, and that sensitive decisions and discussions are not conducted repeatedly and/or unnecessarily. Healthcare professionals need to be aware of parents’ wishes for confidentiality if they have chosen not to disclose their decision or details of their loss to others (such as support person, family/whānau members).

See Section 3: Perinatal loss care for best practice recommendations for parent-centred care planning around birthing in grief, including postnatal care, lactation after loss, leaving hospital and ongoing support in the community. It is essential that parents are given the choice and supported to create memories (including mementos such as photographs) with their baby. This recognises their role as parents. It is appropriate to use the word ‘baby’ if this is acceptable to the parents. Parents should also be asked if they have named their baby and, if so, permission should be sought to use the name. However, it is also important to be aware that some parents may not identify as parents and may choose not to create memories with their baby. In these situations, the lead from parents regarding the preferred language for their baby should be taken. For example, they may prefer the word ‘fetus’ over ‘baby’.10

“It’s about being respectful of that baby in death and that family in birth. Because they’re happening at the same time, in the same space. That space of these moments that you only get once.”

Midwife, Aotearoa New Zealand

For parents and family/whānau who choose a perinatal palliative care approach, providing support services as early as possible maximises the time available for them to consider options and make choices including opportunities for memory making and a birth plan that is consistent with their preferences and hopes. See Section 4: Perinatal palliative care for best practice recommendations.

Healthcare professionals should discuss options for possible investigations (for example perinatal autopsy) with parents. See Section 6: Investigations for perinatal death for best practice recommendations. See the RANZCOG’s Clinical Guideline for Abortion Care: An evidence-based guideline on abortion care in Australia and Aotearoa New Zealand. 

Consensus-based recommendation 2.6

Acknowledge the specific care and support needs of parents who experience a termination of pregnancy and ensure perinatal loss care planning is across the continuum of care.

Framework for care around stillbirth and neonatal death
Social and emotional support for perinatal grief
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Western Pacific Regional Office of the International Stillbirth Alliance
Coordinating Centre, Stillbirth and Neonatal Death Alliance, Perinatal Society of Australia and New Zealand

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

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