Exploring the Concept of Palliative Care for Babies and Their Families



The birth of a baby is typically a happy time; however, for some families the expected happiness at a new life is marred by the awareness that the baby will have a shortened life.

When this does tragically occur, healthcare professionals have an opportunity to ensure that regardless of the timeframe the experience of parents can be thoughtful in terms of creating memories, nurturing and planned in accordance with their wishes.

Congenital structural defects, chromosomal anomalies and extreme prematurity are among the conditions that can lead to a shortened life for babies. In the last decades, the concept and philosophy of palliative care which was borne from the care of adult patients focus on enhancing quality of life and the provision of emotional and practical support. This led to the recognition that children and young people had specific palliative care needs. Since then arising from children’s palliative care was the development and focus on palliative care to babies in both the perinatal and neonatal period. When parents receive devastating news about their baby before or after birth, the care and support they receive from nurses, midwives, doctors and other healthcare professionals can make a profound difference during this intense period of their lives, during the life of their baby before and after birth, and beyond. There may be confusion and misconceptions about the terminology used, which requires clear and thorough explanation, highlighting the importance of effective communication. Terminology will be explored in this chapter, providing context for the subsequent chapters.


Perinatal palliative care Perinatal hospice Neonatal palliative care Families Life-limiting condition 


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© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.Perinatalhospice.orgSaint PaulUSA
  2. 2.UMKC School of MedicineKansas CityUSA

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