Exploring the Concept of Palliative Care for Babies and Their Families
- 309 Downloads
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.
KeywordsPerinatal palliative care Perinatal hospice Neonatal palliative care Families Life-limiting condition
- Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, National Association of Social Workers, National Hospice and Palliative Care Organization, and The National Palliative Care Research Center (2017) Dame Cicely Saunders: her life and work. St. Christopher’s Hospice. www.stchristophers.org.uk/about/damecicelysaunders. Accessed 23 Feb 2017
- Allen G, Laventhal N (2017) Should long-term consequences of NNU care be discussed in terms of prognostic uncertainty or possible harm? AMA J Ethics 19(8):743–752. https://doi.org/10.1001/journalofethics.2017.19.8.ecas1-1708CrossRefPubMedGoogle Scholar
- American College of Obstetricians and Gynecologists’ Committee on Practice Bulletins (2016) Practice Bulletin No.162: Prenatal Diagnostic Testing for Genetic Disorders. Obstet Gynecol 127(5)Google Scholar
- British association for Perinatal Medicine (BAPM) (2019) Perinatal Management of Extreme Preterm Birth Before 27 weeks of Gestation. A BAPM Framework for Practice. Oct 2019. LondonGoogle Scholar
- British association for Perinatal Medicine (BAPM) (2010) Palliative Care-A Framework for Clinical Practice in perinatal Medicine (2010). LondonGoogle Scholar
- Calhoun BC, Hoeldtke NJ (2000) The perinatal hospice: ploughing the field of natal sorrow. Front Fetal Health 1(2):16–33Google Scholar
- D’Almeida MD, Hume RF, Lathrop A, Njoku A, Calhoun BC (2006) Perinatal hospice: family-centered care of the fetus with a lethal condition. J Am Phys Surg 11(2):52–55Google Scholar
- Mancini A, Uthaya S, Beardsley C, Wood D, Modi N (2014) Practical guidance for the management of palliative care on neonatal units. Royal College of Paediatrics and Child Health; Chelsea and Westminster Hospital; NHS Foundation Trust, LondonGoogle Scholar
- Perinatal Hospice & Palliative Care. www.perinatalhospice.org. Edited by Amy Kuebelbeck, who founded the website in 2006
- Together for Short Lives (TfSL) (2017) A perinatal pathway for babies with palliative care needs, 2nd edn. Together for Short LivesGoogle Scholar
- World Health Organization definition of palliative care and definition of children’s palliative care. www.who.int/cancer/palliative/definition/en/. Accessed 23 Feb 2017