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

Care planning and decision making

Supporting parents in decision making requires more than a one-off conversation.25

Care planning is a process, not just a written document.8

Parents face many difficult and emotionally charged decisions when their unborn baby is diagnosed with a life-limiting condition or has died. Decisions will often need to be made about the mode and timing of the baby’s birth along with decisions about end-of-life care.

All care planning should be conducted within a parent-centred decision-making approach, which recognises that decisions faced by parents around the time of perinatal loss are highly sensitive to personal values and preferences and that there is rarely one ‘right’ decision.22,23 This allows parents to be supported and involved in decisions to the extent they choose. Active partnership between parents and healthcare professionals is essential to keep parents’ values and preferences at the centre of care and ensure that they are provided with the best available evidence about benefits, risks and uncertainties of care and are able to reach the most appropriate and informed decision.24,25,26

Members of the multidisciplinary team should be empowered to support families/whānau throughout the pregnancy as they process the diagnosis and/or prognosis and begin to plan care. It is important to communicate openly with parents and families/whānau including providing anticipatory guidance, where possible, and advising on the need for flexibility as care plans may change.27 It is also important to explore with parents their decision-making style, values, and preferences to promote the tailoring of information and approaches to suit their individual needs.23

“After finding out that our baby had died in utero, we were devastated. The two days of planning before our baby was born, allowed us to make wonderful memories that otherwise would have been memories that we would want to forget.”

Bereaved father23

Consensus-based recommendation 3.6

Arrange a formal consultation with parents to discuss their understanding of the diagnosis and options available. Ensure that parents have clear information and time to consider all available options where they need to make decisions. Provide culturally and linguistically appropriate information in a range of formats.

  • Refer to Guiding Conversations booklet and Jiba Pepeny (Star Baby) booklet for Aboriginal and Torres Strait Islander families.

Consensus-based recommendation 3.7

Develop a detailed care plan across the phases of care including:

  • pregnancy care plan, including individualised preparation and support for labour and birth
  • maternal birth care plan including timing and mode of birth
  • newborn care plan
  • perinatal loss care plan
  • discharge plan and ongoing support.

Discussions around care planning should:

  • identify who parents want involved in decision making (for example family/whānau members, other support persons, community Elders or spiritual leaders, or other specialists)
  • acknowledge parents’ (or their chosen support person’s) role as primary decision maker and carer of their baby
  • incorporate parents’ values, preferences, wishes and needs.

Consensus-based recommendation 3.8

Provide multiple opportunities for parents to ask questions and explore their concerns with the same informed, experienced, and trusted healthcare professional.

  • Provide opportunities for parents to revisit their decisions but inform them of time critical issues (for example mode of birth, how the baby’s condition may change, time to autopsy).

Evidence-based recommendation 3.9

Evidence quality: moderate confidence

Engage with parents to develop a detailed care plan that considers their values, preferences, wishes, and concerns.

  • Discuss advantages and disadvantages of options with parents and accompanying family/whānau or support person.
  • Provide appropriate information so that parents know what to expect and can make informed decisions about their care.
  • Ensure care plans are filed in medical records to ensure good communication between all healthcare professionals and members of the multidisciplinary team.
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Coordinating Centre, Stillbirth and Neonatal Death Alliance, Perinatal Society of Australia and New Zealand

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