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

Perinatal palliative care

Background

Perinatal palliative care is a holistic multidisciplinary model of care for both baby and family/whānau in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialised support to families/whānau. The aim is to provide a coordinated continuum of care and support to parents and family/whānau during pregnancy, birth and the newborn period.1 Knowing when to discuss a palliative approach with parents and family/whānau can be challenging; however, providing options and support services as early as possible maximises the time available for parents and family/whānau to consider options and make choices.2

Perinatal palliative care is a right for all babies with a life-threatening or life-limiting illness – and their families.3

Objective

This section provides frontline healthcare professionals with guidance about how best to support parents and family/whānau whose baby has been recognised as having a life-limiting or life-threatening condition, when a palliative care approach has been agreed/chosen. This guidance includes assisting healthcare professionals to:

  • support communication, decision making and care planning with parents
  • strengthen coordinated care across all sectors of health and community agencies
  • support parents in their bereavement.

This section of the Guideline is accompanied by best practice recommendations outlined in Section 2: Approach to care and Section 3: Perinatal loss care. Many of the recommendations contained in those sections also apply to perinatal palliative care. This section focuses on additional aspects of care when a baby is known to have a life-limiting condition and is expected to die at or soon after birth. The Paediatric Palliative Care National Action Plan (2022) is a roadmap for a national approach to prioritise and work towards common goals and objectives for paediatric palliative care including care of babies.

A note about terminology

This guideline uses parent-centred language that is inclusive of all individuals. Throughout this guideline, we use the term ‘woman’ to refer to the person who is pregnant and gives birth. We acknowledge diverse gender identities and that not all individuals who become pregnant and give birth will identify as a woman. The term ‘parent’ is used to refer to expectant and bereaved mothers, fathers, and partners. However, we also acknowledge that not all individuals who experience perinatal loss consider themselves to be parents. This guideline uses ‘baby’ when referring to stillbirth, neonatal death, or termination of pregnancy for medical reasons, because this is preferred by many bereaved parents and validates the magnitude of the loss experienced. This guideline uses ‘healthcare professional’ to denote all those working with bereaved parents and family/whānau.

Resources

  • Appendix 4A: Example of a perinatal palliative care plan
Approach to care
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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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