Palliative care nursing and pediatrics in Intensive Care Unit (ICU): Updated review
Keywords:
Palliative care, Neonatal intensive care unit, Prematurity, Neonatal sepsis, Respiratory distress syndrome, Primary palliative careAbstract
Background: Palliative care in neonatal intensive care units (NICUs) aims to enhance quality of life for critically ill neonates and their families. Despite the American Academy of Pediatrics’ broad recommendations, variability exists in implementing palliative care across healthcare facilities. Common neonatal conditions like prematurity, respiratory distress syndrome (RDS), and neonatal sepsis pose challenges, emphasizing the need for integrative palliative care. Aim: To examine the history, current practices, and emerging trends in neonatal palliative care, emphasizing its implementation in NICUs. Methods: A comprehensive review of neonatal palliative care literature was conducted, highlighting advancements, barriers, and practical approaches to incorporating palliative care in NICU settings. The review included guidelines, clinical pathways, and policy frameworks. Results: Neonatal palliative care has evolved from rudimentary practices to specialized programs addressing complex medical, ethical, and emotional needs. However, significant barriers persist, including fragmented education, interprofessional communication gaps, and limited palliative care training for healthcare providers. Integrating primary palliative care into NICUs has shown potential for improving outcomes, though it requires widespread adoption of foundational skills among neonatal teams. Conclusion: The integration of palliative care into NICUs is crucial for addressing the nuanced needs of critically ill neonates and their families.
Downloads
References
Institute of Medicine of the National Academies. (2014, September 17). Dying in America: Improving quality and honoring individual preferences near the end of life.
Catlin, A., Brandon, D., Wool, C., & Mendes, J. (2015). Palliative and end-of-life care for newborns and infants: Position statement #3063. National Association of Neonatal Nurses. DOI: https://doi.org/10.1097/ANC.0000000000000215
Section on Hospice and Palliative Medicine, & Committee on Hospital Care. (2013). Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics, 132(5), 966–972. DOI: https://doi.org/10.1542/peds.2013-2731
Denney-Koelsch, E., Black, B. P., Cote-Arsenault, D., et al. (2016). A survey of perinatal palliative care programs in the United States: Structure, processes, and outcomes. Journal of Palliative Medicine. https://doi.org/10.1089/jpm.2015.0536 DOI: https://doi.org/10.1089/jpm.2015.0536
Duncan, R. (n.d.). The sociology and ethics of neonatology: Bibliography for housestaff and parents. Neonatology on the Web. Retrieved August 1, 2016, from http://www.neonatology.org/ethics/default.html
Baker, J. P. (1991). The incubator controversy: Pediatricians and the origins of premature infant technology in the United States, 1890 to 1910. Pediatrics, 87(5), 654–662.
Philip, A. G. (2005). The evolution of neonatology. Pediatric Research, 58(4), 799–815. DOI: https://doi.org/10.1203/01.PDR.0000151693.46655.66
Farah, A. L., Bieda, A., & Shiao, S. Y. (1996). The history of the neonatal nurse practitioner in the United States. Neonatal Network, 15(5), 11–21.
Duff, R. S., & Campbell, A. G. (1973). Moral and ethical dilemmas in special care nurseries. New England Journal of Medicine, 289(17), 890–894. DOI: https://doi.org/10.1056/NEJM197310252891705
Rogoff, M. (1995). Silvie’s life: Biography of a baby girl. RDR Books.
Alecson, D. G., & Nolan, K. (1995). Lost lullaby. University of California Press.
Stinson, R., & Stinson, P. (1983). The long dying of Baby Andrew. Little Brown & Co.
Silverman, W. A. (1992). Overtreatment of neonates? A personal retrospective. Pediatrics, 90(6), 971–976. DOI: https://doi.org/10.1542/peds.90.6.971
Lantos, J. D. (2001). Hooked on neonatology. Health Affairs, 20(5), 233–240. DOI: https://doi.org/10.1377/hlthaff.20.5.233
Behrman, R. E., Christ, G. H., Cole, F. S., et al. (2003). When children die: Improving palliative and end-of-life care for children and families. National Academy Press.
Catlin, A. J., & Carter, B. S. (2002). Creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology, 22(3), 184–195. DOI: https://doi.org/10.1038/sj.jp.7210687
Gale, G., & Brooks, A. (2006). Implementing a palliative care program in a newborn intensive care unit. Advances in Neonatal Care, 6(1), 37–53. DOI: https://doi.org/10.1016/j.adnc.2005.11.004
Sumner, L. H., Kavanaugh, K., & Moro, T. (2006). Extending palliative care into pregnancy and the immediate newborn period: State of the practice of perinatal palliative care. Journal of Perinatal & Neonatal Nursing, 20(1), 113–116. DOI: https://doi.org/10.1097/00005237-200601000-00032
Leuthner, S., & Jones, E. L. (2007). Fetal Concerns Program: A model for perinatal palliative care. MCN: The American Journal of Maternal/Child Nursing, 32(5), 272–278. DOI: https://doi.org/10.1097/01.NMC.0000287996.90307.c6
Younge, N., Smith, B. P., Goldberg, R. N., et al. (2015). Impact of a palliative care program on end-of-life care in a neonatal intensive care unit. Journal of Perinatology, 35(3), 218–222. DOI: https://doi.org/10.1038/jp.2014.193
Weiner, J., Sharma, J., Lantos, J., & Kilbride, H. (2011). How infants die in the neonatal intensive care unit: Trends from 1999 through 2008. Archives of Pediatrics & Adolescent Medicine, 165(7), 630–634. https://doi.org/10.1001/archpediatrics.2011.119 DOI: https://doi.org/10.1001/archpediatrics.2011.102
Fontana, M. S., Farrell, C., Gauvin, F., Lacroix, J., & Janvier, A. (2013). Modes of death in pediatrics: Differences in the ethical approach in neonatal and pediatric patients. The Journal of Pediatrics, 162(6), 1107–1111. https://doi.org/10.1016/j.jpeds.2012.11.062 DOI: https://doi.org/10.1016/j.jpeds.2012.12.008
Dupont-Thibodeau, A., Langevin, R., & Janvier, A. (2014). Later rather than sooner: The impact of clinical management on timing and modes of death in the last decade. Acta Paediatrica, 103(11), 1148–1152. https://doi.org/10.1111/apa.12748 DOI: https://doi.org/10.1111/apa.12747
Kobler, K., & Limbo, R. (2011). Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model. Journal of Perinatal & Neonatal Nursing, 25(1), 32–41. https://doi.org/10.1097/JPN.0b013e31820769e2 DOI: https://doi.org/10.1097/JPN.0b013e3181fb592e
Limbo, R., Toce, S., & Peck, T. (2008). Resolve Through Sharing position paper on perinatal palliative care. Bereavement and Advance Care Planning Services.
Engelder, S., Davies, K., Zeilinger, T., & Rutledge, D. (2012). A model program for perinatal palliative services. Advances in Neonatal Care, 12(1), 28–36. https://doi.org/10.1097/ANC.0b013e31824206ed DOI: https://doi.org/10.1097/ANC.0b013e318244031c
Kilby, M. D., Pretlove, S. J., & Bedford Russel, A. R. (2011). Multidisciplinary palliative care in unborn and newborn babies. BMJ, 342, d1808. https://doi.org/10.1136/bmj.d1808 DOI: https://doi.org/10.1136/bmj.d1808
Balaguer, A., Martin-Ancel, A., Ortigoza-Escobar, D., & colleagues. (2012). The model of palliative care in the perinatal setting: A review of the literature. BMC Pediatrics, 12, 1–7. https://doi.org/10.1186/1471-2431-12-25 DOI: https://doi.org/10.1186/1471-2431-12-25
English, N. K., & Hessler, K. L. (2013). Prenatal birth planning for families of the imperiled newborn. Journal of Obstetric, Gynecologic & Neonatal Nursing, 42(3), 390–399. https://doi.org/10.1111/1552-6909.12201 DOI: https://doi.org/10.1111/1552-6909.12031
Corr, C. A., Torkildon, C., & Horgan, M. (2013). The Children’s Project on Palliative/Hospice Services Pediatric Palliative Care Newsletter (Issue #30). National Hospice and Palliative Care Organization.
Marc-Aurele, K. L., & Nelesen, R. (2013). A five-year review of referrals for perinatal palliative care. Journal of Palliative Medicine, 16(1), 1232–1236. https://doi.org/10.1089/jpm.2012.0414 DOI: https://doi.org/10.1089/jpm.2013.0098
Wool, C., Côté-Arsenault, D., Black, P. B., et al. (2016). Provision of services in perinatal palliative care: A multicenter survey in the United States. Journal of Palliative Medicine, 19(3), 279–285. https://doi.org/10.1089/jpm.2015.0356 DOI: https://doi.org/10.1089/jpm.2015.0266
Nelson, J. E. (2006). Identifying and overcoming the barriers to high-quality palliative care in the intensive care unit. Critical Care Medicine, 34(11), S324–S331. https://doi.org/10.1097/01.CCM.0000242912.89594.D8 DOI: https://doi.org/10.1097/01.CCM.0000237249.39179.B1
Temel, J. S., Greer, J. A., Muzikansky, A., et al. (2010). Early palliative care for patients with metastatic non–small-cell lung cancer. New England Journal of Medicine, 363(8), 733-742. DOI: https://doi.org/10.1056/NEJMoa1000678
Morrison, R. S., Dietrich, J., Ladwig, S., et al. (2011). Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Affairs (Millwood), 30(3), 454-463. https://doi.org/10.1377/hlthaff.2010.0223 DOI: https://doi.org/10.1377/hlthaff.2010.0929
Quill, T. E., & Abernethy, A. P. (2013). Generalist plus specialist palliative care—creating a more sustainable model. New England Journal of Medicine, 368(13), 1173-1175. https://doi.org/10.1056/NEJMp1300710 DOI: https://doi.org/10.1056/NEJMp1215620
Catlin, A. (2009). National Perinatal Association palliative care position paper. National Perinatal Association.
Witt, N., Coynor, S., Edwards, C., & Bradshaw, H. (2016). A guide to pain assessment and management in the neonate. Current Emergency and Hospital Medicine Reports, 4, 1-10. https://doi.org/10.1007/s40138-016-0087-7 DOI: https://doi.org/10.1007/s40138-016-0089-y
Loewy, J., Stewart, K., Dassler, A., Telsey, A., & Homel, P. (2013). The effects of music therapy on vital signs, feeding, and sleep in premature infants. Pediatrics, 131(5), 902-918. https://doi.org/10.1542/peds.2012-2832 DOI: https://doi.org/10.1542/peds.2012-1367
Jefferies, A. L. (2012). Canadian Paediatric Society, Fetus and Newborn Committee. Kangaroo care for the preterm infant and family. Paediatric Child Health, 17(3), 141-143. https://doi.org/10.1093/pch/17.3.141 DOI: https://doi.org/10.1093/pch/17.3.141
Hynan, M. T., Mounts, K., & Vanderbilt, D. (2013). Screening parents of high-risk infants for emotional distress: Rationale and recommendations. Journal of Perinatology, 33(10), 748-753. https://doi.org/10.1038/jp.2013.49 DOI: https://doi.org/10.1038/jp.2013.72
Cox, J., & Holden, J. (2003). Perinatal mental health: A guide to the Edinburgh Postnatal Depression Scale (EPDS). Royal College of Psychiatrists.
Hynan, M. T., Steinberg, Z., Baker, L., et al. (2015). Recommendations for mental health professionals in the NICU. Journal of Perinatology, 35(suppl 1), S14-S18. https://doi.org/10.1038/jp.2015.106 DOI: https://doi.org/10.1038/jp.2015.144
Fairman, N., & Irwin, S. A. (2013). Palliative care psychiatry: Update on an emerging dimension of psychiatric practice. Current Psychiatry Reports, 15(7), 374. https://doi.org/10.1007/s11920-013-0374-1 DOI: https://doi.org/10.1007/s11920-013-0374-3
Janvier, A., Lantos, J., Aschner, J., et al. (2016). Stronger and more vulnerable: A balanced view of the impacts of the NICU experience on parents. Pediatrics, 138(3), e20160655. https://doi.org/10.1542/peds.2016-0655 DOI: https://doi.org/10.1542/peds.2016-0655
Back, A. L., Arnold, R. M., Baile, W. F., Tulsky, J. A., & Fryer-Edwards, K. (2005). Approaching difficult communication tasks in oncology. CA: A Cancer Journal for Clinicians, 55(3), 164-177. https://doi.org/10.3322/canjclin.55.3.164 DOI: https://doi.org/10.3322/canjclin.55.3.164
Baile, W. F., Buckman, R., Lenzi, R., et al. (2000). SPIKES-A six-step protocol for delivering bad news: Application to the patient with cancer. Oncologist, 5(4), 302-311. https://doi.org/10.1634/theoncologist.5-4-302 DOI: https://doi.org/10.1634/theoncologist.5-4-302
Aslakson, R. A., Curtis, J. R., & Nelson, J. E. (2014). The changing role of palliative care in the ICU. Critical Care Medicine, 42(11), 2418-2428. https://doi.org/10.1097/CCM.0000000000000021 DOI: https://doi.org/10.1097/CCM.0000000000000573
Cortezzo, D. E., Sanders, M. R., Brownell, E., & Moss, K. (2013). Neonatologists’ perspectives of palliative and end-of-life care in neonatal intensive care units. Journal of Perinatology, 33(9), 731–735. https://doi.org/10.1038/jp.2013.71 DOI: https://doi.org/10.1038/jp.2013.38
Kain, V., Gardner, G., & Yates, P. (2009). Neonatal palliative care attitude scale: Development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing. Pediatrics, 123(2), e207–e213. https://doi.org/10.1542/peds.2008-2613 DOI: https://doi.org/10.1542/peds.2008-2774
Nelson, J. E., Angus, D. C., Weissfeld, L. A., et al. (2006). End-of-life care for the critically ill: A national intensive care unit survey. Critical Care Medicine, 34(10), 2547–2553. https://doi.org/10.1097/01.CCM.0000239232.10187.56 DOI: https://doi.org/10.1097/01.CCM.0000239233.63425.1D
Kenner, C. (2016). The role of neonatal nurses in palliative care. Newborn & Infant Nursing Reviews, 16(7), 74–77. https://doi.org/10.1053/j.nainr.2016.04.007 DOI: https://doi.org/10.1053/j.nainr.2016.03.009
von Gunten, C. F. (2002). Secondary and tertiary palliative care in US hospitals. JAMA, 287(7), 875–881. https://doi.org/10.1001/jama.287.7.875 DOI: https://doi.org/10.1001/jama.287.7.875
Norton, S. A., Hogan, L. A., Holloway, R. G., et al. (2007). Proactive palliative care in the medical intensive care unit: Effects on length of stay for selected high-risk patients. Critical Care Medicine, 35(6), 1530–1535. https://doi.org/10.1097/01.CCM.0000266833.46841.9E DOI: https://doi.org/10.1097/01.CCM.0000266533.06543.0C
Mosenthal, A. C., Weissman, D. E., Curtis, J. R., et al. (2012). Integrating palliative care in the surgical and trauma intensive care unit: A report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care. Critical Care Medicine, 40(4), 1199–1206. https://doi.org/10.1097/CCM.0b013e31823bc8e7 DOI: https://doi.org/10.1097/CCM.0b013e31823bc8e7
Published
How to Cite
Issue
Section
Copyright (c) 2017 International journal of health sciences

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Articles published in the International Journal of Health Sciences (IJHS) are available under Creative Commons Attribution Non-Commercial No Derivatives Licence (CC BY-NC-ND 4.0). Authors retain copyright in their work and grant IJHS right of first publication under CC BY-NC-ND 4.0. Users have the right to read, download, copy, distribute, print, search, or link to the full texts of articles in this journal, and to use them for any other lawful purpose.
Articles published in IJHS can be copied, communicated and shared in their published form for non-commercial purposes provided full attribution is given to the author and the journal. Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgment of its initial publication in this journal.
This copyright notice applies to articles published in IJHS volumes 4 onwards. Please read about the copyright notices for previous volumes under Journal History.