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See stillbirthcre.org.au/parents
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.
Consensus-based recommendation 3.7
Develop a detailed care plan across the phases of care including:
Discussions around care planning should:
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.
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.
Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine
