Abstract
Advance care planning is an effective means of establishing open and honest conversations with parents of babies with life-limiting or potentially life-limiting illness, which can promote informed decision making and enhanced quality of life. It is an umbrella term for plans which can include plans for delivery, plans for escalation of treatment including anticipatory symptom management and resuscitation, a family’s religious, cultural and spiritual wishes, their preferred place of care and/or death, memory making and plans for continuing care after death.
Advance care planning is an iterative process, meaning it is, ideally, a series of conversations rather than a one-off event. This allows time to explore a family’s hopes and fears, and facilitates meaningful planning that aimed at optimising quality of life and maintenance of parental autonomy. Even when death is a likely outcome, by allowing parents opportunities to be actively involved in open and honest planning conversations healthcare professionals can support parental hope in the context of uncertainty.
Advance care planning relies on effective communication and it is important that nurses refine and practise communication skills to support family decision making.
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Downie, J., Kerr-Elliott, T., Craig, F. (2020). Advance Care Planning. In: Mancini, A., Price, J., Kerr-Elliott, T. (eds) Neonatal Palliative Care for Nurses. Springer, Cham. https://doi.org/10.1007/978-3-030-31877-2_13
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