Skip to main content

Exploring the Concept of Palliative Care for Babies and Their Families

  • Chapter
  • First Online:
Neonatal Palliative Care for Nurses
  • 819 Accesses

Abstract

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.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 39.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 54.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 84.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

References

  • 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.ecas1-1708

    Article  PubMed  Google 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 

  • Bidegain M, Younge N (2015) Comfort care vs palliative care: is there a difference in neonates? NeoReviews 16(6):e333–e339. https://doi.org/10.1542/neo.16-6-e333

    Article  Google Scholar 

  • Breeze AC, Lees CC, Kumar A, Missfelder-Lobos HH, Murdoch EM (2007) Palliative care for prenatally diagnosed lethal fetal abnormality. Arch Dis Child Fetal Neonatal Ed 92:F56–F58

    Article  CAS  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. London

    Google Scholar 

  • British association for Perinatal Medicine (BAPM) (2010) Palliative Care-A Framework for Clinical Practice in perinatal Medicine (2010). London

    Google Scholar 

  • Calhoun BC, Hoeldtke NJ (2000) The perinatal hospice: ploughing the field of natal sorrow. Front Fetal Health 1(2):16–33

    Google Scholar 

  • Calhoun BC, Hoeldtke NJ, Hinson RM, Judge KM (1997) Perinatal hospice: should all centers have this service? Neonatal Netw 16(6):101–102

    CAS  PubMed  Google Scholar 

  • Carter BS (2016) More than medication: perinatal palliative care. Acta Paediatr 105:1255–1256

    Article  Google Scholar 

  • Carter BS, Jones PM (2013) Evidence-based comfort care for neonates towards the end of life. Semin Fetal Neonatal Med 18(2):1888–1892

    Article  Google Scholar 

  • Carter BS, Leuthner SR (2003) The ethics of withholding/withdrawing nutrition in the newborn. Semin Perinatol 27(6):480–487

    Article  Google Scholar 

  • Catlin A, Carter BS (2002) Creation of a neonatal end-of-life palliative care protocol. J Perinatol 22(3):184–195

    Article  Google 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):52–55

    Google Scholar 

  • Haug S, Goldstein M, Cummins D, Fayard E, Merritt TA (2017) Using patient-centered care after a prenatal diagnosis of Trisomy 18 or Trisomy 13: a review. JAMA Pediatr 171(4):382–387. Published online February 13, 2017

    Article  Google Scholar 

  • Hellmann J, Williams C, Ives-Baine L, Shah PS (2013) Withdrawal of artificial nutrition and hydration in the neonatal intensive care unit: parental perspectives. Arch Dis Child Fetal Neonatal Ed 98(1):F21–F25

    Article  Google Scholar 

  • Limbo et al. (2017) Perinatal palliative care as an essential element of childbearing choices. Nursing Outlook 65(1):123–125

    Article  Google 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, London

    Google Scholar 

  • Parravicini E (2017) Neonatal palliative care. Curr Opin Pediatr 29(2):135–140. For birth planning resources, see www.perinatalhospice.org/birth-planning.html

    Article  Google Scholar 

  • Parravicini E, Daho’ M, Foe G, Steinwurtzel R, Byrne M (2018) Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program. J Perinatol 38(2):142–147

    Article  CAS  Google Scholar 

  • Perinatal Hospice & Palliative Care. www.perinatalhospice.org. Edited by Amy Kuebelbeck, who founded the website in 2006

  • Santucci G, Battista V, Kang TI (2014) Caring for the infant with Trisomy 18: the bioethical implications of treatment decisions on nurses. J Hospice Palliat Nurs 16(7):388–393

    Article  Google Scholar 

  • Together for Short Lives (TfSL) (2017) A perinatal pathway for babies with palliative care needs, 2nd edn. Together for Short Lives

    Google Scholar 

  • Wool C (2013) State of the science on perinatal palliative care. J Obstet Gynecol Neonatal Nurs 42(3):372–382

    Article  Google Scholar 

  • Wool C, Kain VJ, Mendes J, Carter BS (2018) Quality predictors of parental satisfaction after birth of infants with life-limiting conditions. Acta Paediatr 107(2):276–282

    Article  Google 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

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Amy Kuebelbeck .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2020 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Kuebelbeck, A., Carter, B. (2020). Exploring the Concept of Palliative Care for Babies and Their Families. 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_2

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-31877-2_2

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-31876-5

  • Online ISBN: 978-3-030-31877-2

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics