Empowering neonatology providers in utilizing primary palliative care skills.
Resources
Please be sure to check out our Instagram, @tecan_togetherincare for more information!
We have compiled some resources for NICU providers and NICU family members, which we have included below. We will continue to update this as more resources become available, so please check back often.
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Books
Perinatal Palliative Care: A Clinical Guide
By: Erin M. Denney-Koelsch, Denise Côté-Arsenault
Navigating Communication with Seriously Ill Patients
By: Robert M Arnold, Anthony L Back, Elise C Carey, James A Tulsky, Gordon J Wood, Holly B Yang
Handbook of Perinatal and Neonatal Palliative Care: A Guide for Nurses, Physicians, and Other Health Professionals
By: Rana Limbo PhD RN CPLC FAAN, Charlotte Wool PhD RN, Brian Carter MD FAAP
Courageous Conversations on Dying - The Gift of Palliative Care: A Practical Guide for Physicians, Healthcare Providers, & All the People They Serve
By: Shahid Aziz MD
Pediatric Palliative Care Consultant: Guidelines for Effective Management of Symptoms
Journal Articles
Perinatal Palliative Care Birth Planning as Advance Care Planning
Cortezzo DE, Ellis K, Schlegel A. Perinatal Palliative Care Birth Planning as Advance Care Planning. Front Pediatr. 2020 Sep 8;8:556. doi: 10.3389/fped.2020.00556. PMID: 33014940; PMCID: PMC7505922.
Operationalizing neonatal palliative care
Boss RD, Mercurio MR. Operationalizing neonatal palliative care. Semin Fetal Neonatal Med. 2023 Aug;28(4):101474. doi: 10.1016/j.siny.2023.101474. Epub 2023 Jul 16. PMID: 37516556.
Perinatal Palliative Care Birth Planning as Advance Care Planning
Cortezzo DE, Ellis K, Schlegel A. Perinatal Palliative Care Birth Planning as Advance Care Planning. Front Pediatr. 2020 Sep 8;8:556. doi: 10.3389/fped.2020.00556. PMID: 33014940; PMCID: PMC7505922.
"Have no regrets:" Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis
Côté-Arsenault D, Denney-Koelsch E. "Have no regrets:" Parents' experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med. 2016 Apr;154:100-9. doi: 10.1016/j.socscimed.2016.02.033. Epub 2016 Feb 26. PMID: 26954999; PMCID: PMC4809640.
Fetal palliative care
Leuthner SR. Fetal palliative care. Clin Perinatol. 2004 Sep;31(3):649-65. doi: 10.1016/j.clp.2004.04.018.
Whom are we comforting? An analysis of comfort medications delivered to dying neonates
Janvier A, Meadow W, Leuthner SR, Andrews B, Lagatta J, Bos A, Lane L, Verhagen AA. Whom are we comforting? An analysis of comfort medications delivered to dying neonates. J Pediatr. 2011 Aug;159(2):206-10. doi: 10.1016/j.jpeds.2011.01.022. Epub 2011 Feb 26.
Personalized communication with parents of children born at less than 25 weeks: Moving from doctor-driven to parent-personalized discussions
Haward MF, Payot A, Feudtner C, Janvier A. Personalized communication with parents of children born at less than 25 weeks: Moving from doctor-driven to parent-personalized discussions. Semin Perinatol. 2022 Mar;46(2):151551.
Trauma Informed Care in the Neonatal Intensive Care Unit
Hansen K, Davis P, Hubbard DK. Trauma Informed Care in the Neonatal Intensive Care Unit. J Soc Work End Life Palliat Care. 2023 Oct-Dec;19(4):326-335.
Social Determinants of Comfort: A New Term for End-of-Life Care
Mendola A, Naumann WC, Mooney-Doyle K, Lindley LC. Social Determinants of Comfort: A New Term for End-of-Life Care. J Palliat Med. 2021 Aug;24(8):1130-1131.
On Being Fired: When Patients or Their Parents Fire Their Physician
Cummings CL. On Being Fired: When Patients or Their Parents Fire Their Physician. Hastings Cent Rep. 2016 Sep;46(5):3-4.
Editorial: Perinatal Palliative Care Comes of Age
Carter BS, Parravicini E, Benini F, Lago P. Editorial: Perinatal Palliative Care Comes of Age. Front Pediatr. 2021 Jun 22;9:709383. doi: 10.3389/fped.2021.709383. PMID: 34239852; PMCID: PMC8257932.
The logistics of withdrawing life-sustaining medical treatment in the neonatal intensive care unit
Rholl E, Leuthner SR. The logistics of withdrawing life-sustaining medical treatment in the neonatal intensive care unit. Semin Fetal Neonatal Med. 2023 Aug; 28(4):101443. doi: 10.1016/j.siny.2023.101443. Epub 2023 Apr 20. PMID: 37596126.
Neonatal End-of-Life Symptom Management
Cortezzo DE, Meyer M. Neonatal End-of-Life Symptom Management. Front Pediatr. 2020 Sep 11;8:574121. doi: 10.3389/fped.2020.574121. PMID: 33042931; PMCID: PMC7516797.
Critical decision-making in neonatology and pediatrics: the I–P–O framework
Mercurio MR, Cummings CL. Critical decision-making in neonatology and pediatrics: the I-P-O framework. J Perinatol. 2021 Jan;41(1):173-178. doi: 10.1038/s41372-020-00841-6. Epub 2020 Sep 30.
Addressing 10 Myths About Pediatric Palliative Care
Sadler K, Khan S, AlGhamdi K, Alyami HH, Nancarrow L. Addressing 10 Myths About Pediatric Palliative Care. Am J Hosp Palliat Care. 2024 Feb;41(2):193-202. doi: 10.1177/10499091231174202. Epub 2023 May 5. PMID: 37144635.
Infant end-of-life care: the parents' perspective
Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents' perspective. J Perinatol. 2007 Aug;27(8):510-6. doi: 10.1038/sj.jp.7211755. Epub 2007 Apr 19.
Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology
Janvier A, Barrington K, Farlow B. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Seminars in Perinatology. 2014;38(1):38-46.
Trauma-informed care in the newborn intensive care unit: promoting safety, security and connectedness
Sanders MR, Hall SL. Trauma-informed care in the newborn intensive care unit: promoting safety, security and connectedness. J Perinatol. 2018 Jan;38(1):3-10.
Bias and Disparities in Neonatal End-of-Life Care
Younge T, Murosko D, Sran SS, Major-Kincade T. Bias and Disparities in Neonatal End-of-Life Care. Neoreviews. 2025 Dec 1;26(12):e865-e874.
Why Good Palliative Care Clinicians Get Fired
Rosenberg AR, Rabinowitz E, Arnold RM. Why Good Palliative Care Clinicians Get Fired. JAMA. 2025 Jun 3;333(21):1864-1865.
Courageous Parents Network
Check out their website for more information, including their provider portal!
HANDOUT
Perinatal Palliative Care Pathways: Options for Caregivers to Consider
HANDOUT
Introduction to
Pediatric Palliative Care
BLOG
A Mother's Letter to Pediatric Providers: It is never a bad idea to make the referral to palliative care
PHONE APP
Courageous Parents Network
VIDEO
Family Perspective on Postnatal Diagnoses: "A diagnosis in utero of holoprosencephaly"
VIDEO
What does the miracle look like?
VIDEO
It Is Possible To Do Intensive Care and Palliative Care Simultaneously
VIDEO
Family Perspective on Postnatal Diagnoses: "A poor diagnosis in the NICU, delivered poorly"
BLOG
How Palliative Care Helps Us Balance Action and Acceptance
VIDEO
“I don’t use the term of 'quality of life'. It labels something that is very difficult to label."
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Empowering Neonatal Teams in Palliative Care
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