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

Section 4 references

  1. Department of Health Western Australia. Perinatal Palliative Care Model of Care. 2015; Available from:
  2. Neonatal Nurses College Aotearoa and New Zealand Nurses Organisation. Comfort as a Model of Care. 2015 October; Available from:
  3. Benini, F., et al., International standards for pediatric palliative care: From IMPaCCT to GO-PPaCS. Journal of Pain and Symptom Management, 2022. 63(5): p. e529–e543 doi: 10.1016/j.jpainsymman.2021.12.031.
  4. National Association of Neonatal Nurses. Palliative and End-of-Life Care for Newborns and Infants: Position Statement #3063 2015; Available from:
  5. Beckstrand, R.L., et al., NICU nurses’ suggestions for improving end-of-life care obstacles. Journal of Neonatal Nursing, 2019. 25(1): p. 32–36 doi: 10.1016/j.jnn.2018.08.004.
  6. Donovan, L.A., et al., Perspectives of health professionals and educators on the outcomes of a national education project in pediatric palliative care: The quality of Care Collaborative Australia. Advances in Medical Education and Practice, 2019. 10: p. 949–958 doi: 10.2147/AMEP.S219721.
  7. Kenner, C., J. Press, and D. Ryan, Recommendations for palliative and bereavement care in the NICU: A family-centered integrative approach. Journal of Perinatology, 2015. 35(1): p. S19–S23 doi: 10.1038/jp.2015.145.
  8. Rocha Catania, T., et al., When one knows a fetus is expected to die: Palliative care in the context of prenatal diagnosis of fetal malformations. Journal of Palliative Medicine, 2017. 20(9): p. 1020–1031 doi: 10.1089/jpm.2016.0430.
  9. Wool, C., Systematic review of the literature: parental outcomes after diagnosis of fetal anomaly. Advances in Neonatal Care, 2011. 11(3): p. 182-1927
  10. Lou, S., et al., Parental response to severe or lethal prenatal diagnosis: A systematic review of qualitative studies. Prenatal Diagnosis, 2017. 37(8): p. 731–743 doi: 10.1002/pd.5093.
  11. Cote-Arsenault, D., E. Denney-Koelsch, and G. Elliott, ‘Creating a safe space’: How perinatal palliative care coordinators navigate care and support for families. International Journal of Palliative Nursing, 2021. 27(8): p. 386–400 doi: 10.12968/ijpn.2021.27.8.386.
  12. Jones, E.L. and S.R. Leuthner, Interdisciplinary perinatal palliative care coordination, birth planning, and support of the team, in Perinatal palliative care: A clinical guide, E.M. Denney-Koelsch and D. Côté-Arsenault, Editors. 2020, Springer. p. 333–355.
  13. Cole, J.C.M., et al., A proposed model for perinatal palliative care. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 2017. 46(6): p. 904–911 doi: 10.1016/j.jogn.2017.01.014.
  14. Lago, P., et al., Summary of the key concepts on how to develop a perinatal palliative care program. Frontiers in Pediatrics, 2020. 8(596744) doi: 10.3389/fped.2020.596744.
  15. American College of Obstetricians and Gynecologists, Perinatal palliative care: ACOG Committee Opinion, Number 786. Obstetrics & Gynecology, 2019. 134(3): p. e84-e89 doi: 10.1097/aog.0000000000003425.
  16. Falke, M. and L.B. Rubarth, Implementation of a perinatal hospice program. Advances in Neonatal Care, 2021. 203: p. 223-228 doi: 10.1097/ANC.0000000000000755.
  17. Catlin, A. and B. Carter, Creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology, 2002. 22(3): p. 184–195 doi: 10.1038/
  18. Together for Short Lives. A guide to children’s palliative care (4th edition). 2018; Fourth [Available from:
  19. Cortezzo, D.E., K. Ellis, and A. Schlegel, Perinatal palliative care birth planning as advance care planning. Frontiers in Pediatrics, 2020. 8: p. 556 doi: 10.3389/fped.2020.00556.
  20. Lappeman, M. and L. Swartz, Stillbirth in Khayelitsha Hospital, South Africa: Women’s experiences of care. British Journal of Psychotherapy, 2022. 38(2): p. 353–370 doi: 10.1111/bjp.12722.
  21. Kilcullen, M. and S. Ireland, Palliative care in the neonatal unit: neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery. BMC Palliative Care, 2017. 16: p. 1-12 doi: 10.1186/s12904-017-0202-3.
  22. Humphrey, L.M. and A.B. Schlegel, Longitudinal perinatal palliative care for severe fetal neurologic diagnoses. Seminars in Pediatric Neurology, 2022. 42: p. 100965 doi: 10.1016/j.spen.2022.100965.
  23. Bolognani, M., et al., Development of a perinatal palliative care model at a level II perinatal center supported by a pediatric palliative care network. Frontiers in Pediatrics, 2021. 8 doi: 10.3389/fped.2020.574397.
  24. Tewani, K., et al., Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study. Palliative Medicine, 2023. 37(9): p. 1379–1388 doi: 10.1177/02692163231171182.
  25. Kamrath, H.J., et al., Lasting legacy: Maternal perspectives of perinatal palliative care. Journal of Palliative Medicine, 2019. 22(3): p. 310–315 doi: 10.1089/jpm.2018.0303.
  26. New Zealand Paediatric Palliative Care Clinical Network. Paediatric palliative care clinical guidelines. 2019; Available from:
  27. Côté-Arsenault, D. and E. Denney-Koelsch, “Have no regrets:” Parents’ experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Social Science & Medicine, 2016. 154: p. 100–109 doi: 10.1016/j.socscimed.2016.02.033.
  28. Andrews, E., et al., Legacy building in pediatric end-of-life care through innovative use of a digital stethoscope. Palliative Medicine Reports, 2020. 1(1): p. 149–155 doi: 10.1089/pmr.2020.0028.
  29. Thornton, R., P. Nicholson, and L. Harms, Scoping review of memory making in bereavement care for parents after the death of a newborn. JOGNN: Journal of Obstetric, Gynecologic & Neonatal Nursing, 2019. 48(3): p. 351–360 doi: 10.1016/j.jogn.2019.02.001.
  30. Thornton, R., P. Nicholson, and L. Harms, Being a parent: Findings from a grounded theory of memory-making in neonatal end-of-life care. Journal of Pediatric Nursing, 2021. 61: p. 51–58 doi: 10.1016/j.pedn.2021.03.013.
  31. Abraham, A. and M.J. Hendriks, “You can only give warmth to your baby when it’s too late”: Parents’ bonding with their extremely preterm and dying child. Qualitative Health Research, 2017. 27(14): p. 2100–2115 doi: 10.1177/1049732317721476.
  32. Thornton, R., P. Nicholson, and L. Harms, Creating evidence: Findings from a grounded theory of memory-making in neonata bereavement care in Australia. Journal of Pediatric Nursing, 2020. 53: p. 29–35 doi: 10.1016/j.pedn.2020.04.006.

After the baby’s birth
Section 4 appendices
Stillbirth Logo
Western Pacific Regional Office of the International Stillbirth Alliance
Coordinating Centre, Stillbirth and Neonatal Death Alliance, Perinatal Society of Australia and New Zealand

Level 3, Aubigny Place
Mater Research Institute
Raymond Terrace,
South Brisbane QLD 4101
The University of Queensland Faculty of Medicine

Copyright © Stillbirth CRE