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

Communication and decision making

Frontline healthcare professionals providing perinatal loss care play a critical role in helping parents to understand why their baby died and to make a decision about investigations that is right for them. A parent-centred approach to counselling should be taken by a healthcare professional with appropriate training and skills, supported by the multidisciplinary care team.15

A wide variety of tests and investigations are potentially available. Autopsy combined with genetic testing, placental pathology along with a comprehensive history, and other testing depending on the clinical scenario or initial findings is considered optimal for most perinatal deaths.6

Consenting to autopsy for their baby is one of the most difficult and confronting decisions that parents will make. Some parents may feel strongly for or against an autopsy, and some will feel somewhere in between.16 All perinatal autopsies require parental consent, except for a small number of deaths where a coronial autopsy is required.

Even when the cause of death remains unexplained after completion of all investigations, parents have reported consolation in having explored and excluded known causes to make sense of their baby’s death and alleviate feelings of guilt and self-blame. 4,19-23

“The post-mortem was inconclusive – no cause found – and I felt better because it was nothing I’d done.”

Bereaved parent, Aotearoa New Zealand.20

A diverse range of factors influences parents’ final decision about autopsy, including personal values; views of extended family/whānau; societal norms; cultural, religious and spiritual beliefs and practices; parents’ relationship/s with their healthcare team; parents’ degree of emotional distress; and legal issues.14 The emotional benefits of understanding why their baby died may be important for parents.4,17-20 Congenital anomalies account for around one-third of perinatal deaths in Australia and Aotearoa New Zealand,7,8 often following a termination of pregnancy. For some parents who experience a termination of pregnancy for fetal anomaly, autopsy can provide reassurance and validation for their decision.

“I wanted the doctor to tell me only the most important information because there was too much to take in, but my partner wanted much more detail and to find out everything. We both needed time to think about things.”

Parent quote from the Guiding Conversations booklet.

The way in which healthcare professionals discuss and convey information about investigations such as autopsy has an important influence on parents’ decision-making. If healthcare professionals are reluctant to discuss autopsy or believe and convey (even through subtle cues via tone, timing, and content) that an autopsy will add little to no value to understanding why a baby died, parents may be more likely to decline. However, research has shown that parents may later regret not consenting to an autopsy.16 It is important for healthcare professionals to provide parents with appropriate counselling regarding their options for investigations, including autopsy, to help them make the decision that is right for them and their baby.

Ensuring that parents feel fully informed and adequately involved in the decision-making process may help to minimise regret, regardless of the decision made. Box 1 summarises steps that healthcare professionals can take to create a supportive and parent-centred approach to the autopsy consent process.

To create a supportive decision-making environment, healthcare professionals should:

Recognise:

  • Autopsy consent as a difficult decision with long-lasting consequences: support is essential at the time of the decision but doesn’t end there.
  • Parents may feel strongly for or against, or somewhere in between and many will feel overwhelmed. Finding out where parents are on the decision spectrum is an entry point for tailoring information.

Expect:

  • A wide range of views: elicit from parents what they see as important, including future pregnancies, the baby’s legacy. Share what other parents have found important.

Avoid:

  • Making assumptions: decision drivers may operate in unexpected ways.
  • Imposing values, opinions, or decisions on parents. Helping parents to make informed autonomous decisions may minimise regret. The healthcare professional’s cues can be subtle, and it is important to be mindful of tone, timing, and content. Allow parents to guide the level of detail.

Acknowledge:

  • Parents in the same way as parents who have delivered a living baby, with strong needs to protect their baby from any further harm. Allow parents to spend time with their baby and to engage in parenting activities.
  • Feelings of self-blame and questions about preventability.
  • Consideration of these issues may help clarify concerns.

Assure:

  • Parents that their baby will be treated with care and respect: allow parents to know where their baby will be and who will provide care.

Prevent:

  • Unnecessary distress arising from poor communication of results. Establish clear processes and timelines for informing parents of results and ensure settings for the delivery of results are appropriate.

Box 1: Core attributes of parent-centred practice on counselling on options for stillbirth investigations16

Parents may have many questions and concerns about autopsy and other investigations, and these may not always be anticipated by healthcare professionals. Some parents may find it hard to voice their questions and concerns. Concerns may include needing to know16,24:  

  • that their baby is cared for and protected
  • where their baby will be taken for investigations
  • whether they will be able to see their baby again, and how their baby may look after autopsy
  • if there may be delays for funeral arrangements or other important rituals or ceremonies
  • the amount of time they will be able to spend with their baby, and whether they can take their baby home if they wish.

“We made some decisions on our own, but there were times when it helped to ask questions and talk to others. It was exhausting and overwhelming, but in the end we feel comfortable with our decision. We felt reassured to know that our baby would always be treated with care and respect.”

Parent quote from the Guiding Conversations booklet.

Written or digital resources should be used to support decision making by allowing parents to review information in their own time and reflect on what is most important to them. The impact of grief and loss on parents’ ability to process information and to make decisions that are best for them can be acknowledged by providing appropriate resources and decision-support tools. Refer to Appendix 6I for parent resources to support decision making around investigations, including the Guiding Conversations booklet (pages 47–59). In Aotearoa New Zealand, Pānui/information for whānau/families about post-mortem examination (brochure) is available in English, te reo Māori, Samoan, Hindi or Chinese.

Consensus-based recommendation 6.1

Counselling parents about options for investigations (including the option of a full autopsy or less invasive options) should be conducted within a parent-centred decision-making framework by an experienced healthcare professional who has established rapport with the parents.

  • Discussions should include the value and limitations of the investigations in their circumstances. Parents should be given multiple opportunities to discuss their options according to their needs

Consensus-based recommendation 6.2

Ideally, counselling parents on their options for investigations (including autopsy) is informed by a clinical case review by a multidisciplinary team, including a perinatal/paediatric pathologist, the lead obstetrician or paediatrician, and radiologist.

Evidence-based recommendation 6.3

Evidence quality: High confidence

Information (written and verbal) and counselling for parents about all investigations, including autopsy, should include:

  • the possibility that the cause of death may not be determined despite all investigations being undertaken
  • that, while a cause may not be found, excluding some potential causes of death may be helpful
  • a full investigation, including autopsy, provides the best possible information to help understand why the baby died and to plan future pregnancies
  • when and how they will be provided with the outcome of the investigations undertaken
  • whether the baby will need to be transported to another centre for the investigations, how the transport is organised, when the baby will be returned to them.
  • how their baby will look after the autopsy
  • any costs to them related to investigations.

Consensus-based recommendation 6.4

Assure parents that, throughout the process of autopsy and other investigations, their baby will be cared for by highly trained healthcare professionals who will treat their baby with respect as they do all possible to understand the cause of death.

Consensus-based recommendation 6.5
Explain to parents that the placenta can be returned to them following examination by the pathologist. The pathology service should be notified of the parents’ wishes when the placental examination is requested. Advice should be given to families/whānau about any relevant health and safety precautions when handling the placenta.

Cultural considerations

Providing care in a culturally diverse population requires healthcare professionals to acknowledge and address a wide range of beliefs and practices that may be important to parents and families/whānau around the time of a baby’s death. Parents from minority populations, and those with fewer educational opportunities are significantly less likely to be offered postmortem investigations such as autopsy.25,26

Perceptions about cultural, religious, and spiritual concerns should not be reasons to avoid discussions about investigations.25 Discussions around cultural, religious, and spiritual needs associated with investigations should be had with parents in the presence of (if required) cultural Elders and interpreters. Open questions help to explore with families/whānau their needs and preferences and to identify appropriate actions, which may include contacting appropriate cultural, religious, or spiritual support services or engaging an accredited interpreter. For example, for Māori whānau the decision-making process may be related to investigations being perceived as a procedure that may disrupt Māori tikanga and cultural protocols around grief, rather than the knowledge that may be gained. Healthcare professionals should avoid assuming that viewpoints are similar within groups. Uptake of investigations may increase if turnaround times can be minimised and awareness raised among community members and healthcare professionals.27,28

“I knew I needed Bub’s placenta back in the ground on our Country. To me, it means that Bub is connected to her place, even when she was gone. It helps our family to be strong because a part of her is still here.”

Parent quote from the Jiba Pepeny (Star Baby) booklet.

Physical handling and positioning of baby and placenta may hold cultural, religious, and spiritual significance and meaning for each family/whānau. This may be different within and between cultures. For example, one item in the Arab Muslims’ Perceptions of Perinatal Loss Care scale developed in the USA is “I would want my baby turned on his/her right side (towards Mecca) while in the hospital”.29

“[Some non-Aboriginal care providers] have no idea that the placenta is a sacred part of this birth”

Metro Indigenous Health worker, Australia

Burying the placenta is a common tradition in many First Nations cultures. For Aboriginal and Torres Strait Islander peoples, the placenta is considered the baby’s soul map, which must be buried for them to receive Ancestor guidance when they are older.30

Evidence-based recommendation 6.6

Evidence quality: Moderate confidence

Healthcare professionals must respectfully ask parents and family/whānau throughout their care if they have cultural, religious, or spiritual care needs including preferences for discussing and making decisions about investigations to understand why their baby died.

  • Healthcare professionals should avoid making assumptions and must work in partnership with families/whānau to ensure care is individualised and that their needs are met, seeking further guidance where needed.

Follow-up and communication with parents about results of investigations

Parents should be assured that everything possible will be done to understand the cause of their baby’s death and that this will include standard investigations and a review of the care provided to facilitate improvements to future care. Finding out the results of investigations can be a difficult time for parents and families/whānau. Uncertainty around timeframes and lengthy waiting times for results are a commonly reported source of distress for many parents.16,25,31 It is important that parents are assured that they will receive results as soon as they are available.

Healthcare professionals and parents report long delays between hospital discharge and follow-up consultations including information on autopsy results. The delays are characterised by a lack of information and support.15 A national survey in the UK reported that fewer than half of parents had the results of their baby’s autopsy within eight weeks.15,32 A clear timeline for results and reports of investigations should be made in conjunction with the entire care team, including pathologists, to allow for better structure and predetermined expectations prior to discharge.15,33 The Royal College of Pathologists of Australasia (RCPA) have developed best practice guidelines for perinatal pathologists.34

Evidence-based recommendation 6.7

Evidence quality: Moderate confidence

Provide parents with a clear timeline for receiving results of investigations and reports prior to discharge. The timeline should be made in conjunction with the multidisciplinary care team, including pathologists.

Bereaved parents often place high value on information about the causes of and contributors to their baby’s death to inform quality improvement processes.35,36 This includes parents being involved in perinatal mortality audit review processes to the extent that they wish. Parent engagement in the review process is strongly advocated by bereaved parents, parent support organisations and many healthcare professionals.36 It should be explained that the hospital has a clinical meeting where all the results of the investigations are reviewed by a team of experienced healthcare professionals and that the findings of that meeting will be discussed with parents at a follow-up visit.31,37 See Section 7: Perinatal mortality audit and classifications for more information and recommendations on perinatal mortality review and classification, including parent engagement.

“I also wanted the possibility that any information learned from her autopsy might prevent loss for someone else sometime in the future. I wanted her to have a ‘purpose’.”

Bereaved parent, Australia.16

Investigations for perinatal death
Approach to investigations for perinatal deaths
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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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The University of Queensland Faculty of Medicine

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