Handbook of Perinatal and Neonatal Palliative Care
Rana Limbo, Charlotte Wool,
Brian S. Carter, eds. (Springer, 2019)
American Journal of Nursing
Book of the Year in two categories
Neonatal Palliative Care for Nurses
Alexandra Mancini, Jayne Price, Tara Kerr-Elliott, eds. (Springer, 2020)
ACOG Committee Opinion on Perinatal Palliative Care;
also endorsed by the Society for Maternal-Fetal Medicine and the American Academy of Pediatrics
From the conclusions: "Health care providers and institutions are encouraged to develop perinatal palliative care programs."
Perinatal Palliative Care: A Clinical Guide. Denney-Koelsch E, Côté-Arsenault D, eds.S.l.: Springer Nature; 2020.
FEATURED RESOURCES
Perinatal Palliative Care Tool Kit for developing a program and Position Paper on Perinatal Palliative Care, from RTS Bereavement Services/Gundersen Health System.
Limbo RK, Wool C, Carter BS. Handbook of Perinatal and Neonatal Palliative Care: A Guide for Nurses, Physicians, and Other Health Professionals. New York: Springer Publishing Company, LLC; 2020. Review: "A book whose time has come." Winner of American Journal of Nursing Book of the Year in two categories
American College of Obstetricians and Gynecologists Committee Opinion: Perinatal Palliative Care. Obstetrics & Gynecology. 2019;134(3).
Resources for patient care from the Neonatal Comfort Care Program at Columbia University Children's Health and New York-Presbyterian Morgan Stanley Children's Hospital, including downloadable Guidelines for Comfort, Admission Order Set, Birth Plan-Medical, Birth Plan-Team, Pathway-Perinatal, Tasks-Perinatal, Pathway-NICU and Tasks-NICU.
British Association of Perinatal Medicine Framework: Palliative care in perinatal medicine
International Children's Palliative Care Network free online training course in perinatal palliative care (endorsed by the University of South Wales) available in English and in French, in collaboration with La Société Française de Soins Palliatifs Pédiatriques, 2024.
Caring for your baby when the future is uncertain, from Together for Short Lives and Bliss in the U.K.
Care Around Stillbirth and Neonatal Death Clinical Practice Guideline: Perinatal Palliative Care from the Stillbirth Centre of Research Excellence, based at Mater Research and the University of Queensland, in partnership with Perinatal Society of Australia and New Zealand (PSANZ), 2024.
Ziegler TR, Kuebelbeck A. Close to Home: Perinatal Palliative Care in a Community Hospital. 2020;20(3):196-203.
Issue topic: Perinatal and Neonatal Palliative and Hospice Care, Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization. Issue 70, February 2023.
Issue topic: Perinatal and Neonatal Hospice/Palliative Care, Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization. Issue 49, November 2017.
Kuebelbeck A. Perinatal Palliative Care: Past, Present and Future. National Hospice and Palliative Care Organization Pediatric E-Journal, Issue 70. February 2023, 20-23.
Kuebelbeck A. Perinatal palliative care: Two decades of exponential growth. In Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, in collaboration with the National Hospice and Palliative Care Organization, Issue 49. November 2017.
A Perinatal Pathway for Babies with Palliative Care Needs from Together for Short Lives in the U.K., developed in conjunction with ethicists and clinicians working across obstetrics, antenatal and neonatal care, and children’s palliative care. Full pathway available for free download.
American Academy of Nursing policy brief, Perinatal palliative care as an essential element of childbearing choices. Limbo R, Brandon D, Côté-Arsenault D, Kavanaugh K, Kuebelbeck A, Wool C. Nursing Outlook, January/February 2017(65)1:123–125.
Association of Women’s Health, Obstetric and Neonatal Nurses position statement on the importance of perinatal palliative care, Nov. 1, 2023
Palliative care (supportive and end-of-life care): A framework for clinical practice in perinatal medicine and its accompanying report, from the British Association of Perinatal Medicine
Patch South Africa Perinatal Palliative Care: A guide to supporting families when a baby is at high risk of dying before or shortly after birth and webinar
Perinatal Palliative Care and End-of-Life Web-Based Toolkit from the Texas Pediatric Society Committee on Fetus and Newborn
HSE (Ireland's national health service) National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death, including perinatal palliative care, August 2016
Palliativ- und Trauerbegleitung in der Neonatologie (PaluTiN), "Palliative Care and Grief Counseling in Perinatology and Neonatology: Recommendations for professional caregivers in the field of prenatal diagnostics, pregnancy crisis counseling, obstetrics, neonatology, pediatrics and aftercare," available in English and German
Collier R. Providing hospice in the womb. Canadian Medical Association Journal, Feb. 17, 2011.
Birth plan, in-house comfort care orders, and discharge comfort care orders from St. Joseph Health System's Perinatal Comfort Care Program, Orange, California. (Posted here with permission; see disclaimer.)
North West Perinatal/Neonatal Palliative Care online resources (North West Neonatal Operational Delivery Network, U.K.)
Northern Ireland Antenatal Palliative Care Pathway and User Guide, January 2022
Kobler K, Limbo R, Oakdale C. Childbirth education for parents receiving perinatal palliative care. International Journal of Childbirth Education. April 2012;27(2):26-32.
Hoeldtke NJ, Calhoun BC. Perinatal hospice. Am J Obstet Gynecol. 2001 Sep;185(3):525-9.
International Children's Palliative Care Network fact sheet on hospice and palliative care for children, including perinatal palliative care. July 2013
Kuebelbeck A. "Incompatible with life," compatible with love: Perinatal hospice and palliative care. Pallimed, a Hospice & Palliative Medicine Blog. Oct. 17, 2016.
McGovern K. Continuing the pregnancy when the unborn child has a life-limiting condition. Chisholm Health Ethics Bulletin, Caroline Chisholm Centre for Health Ethics, Melbourne, Australia, Autumn 2012.
Wool C. State of the Science on Perinatal Palliative Care. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 2013 May/June; 42(3):372–382.
FEATURED VIDEOS
CONFERENCES AND TRAINING
Resolve Through Sharing Bereavement Services clinically based professional training for caregivers, including perinatal death bereavement training (miscarriage, ectopic pregnancy, stillbirth, newborn death) and perinatal palliative care. Professional training workshops include: "Blueprint for a Perinatal Palliative Care Program®: Caring for families who continue the pregnancy after their baby is diagnosed with a life-limiting condition" and "Blueprint for a Perinatal Palliative Care Program®: The Basics." Gundersen Health System, La Crosse, Wisconsin
Next-Level Perinatal Palliative Care training, annual training co-sponsored by Columbia University's Department of Obstetrics and Gynecology and Department of Pediatrics and the Columbia Neonatal Comfort Care Program, New York City
Neonatal Palliative Care: An Enhanced Course, virtual training from the International Children's Palliative Care Network (new December 2023)
Pregnancy Loss and Infant Death Alliance (PLIDA): professional networking and biennial International Perinatal Bereavement Conference
Free e-learning course on perinatal palliative care from the International Children's Palliative Care Network (course endorsed by the University of South Wales)
Center to Advance Palliative Care (CAPC) Pediatric Palliative Care Field Guide, including perinatal palliative care. Free download
Tammy Ruiz Ziegler BSN MA RN CPLC, available for coaching and consulting on perinatal palliative care and the bioethics of perinatal loss. Founder of the perinatal palliative care program at Mary Washington Hospital in Fredericksburg, Virginia, and creator of a video about perinatal hospice that has been translated into multiple languages.
Presentations by Amy Kuebelbeck
See also the perinatal hospice & palliative care Facebook page and Twitter account for announcements of upcoming conferences.
Online education:
Hospice and Palliative Nurses Association Certification in Perinatal Loss Care
Hospice and Palliative Nurses Association ethics course When Hello Means Goodbye: An Exploration into Perinatal Palliative Care
International Children's Palliative Care Network free online training course in perinatal palliative care (endorsed by the University of South Wales) available in English and in French, in collaboration with La Société Française de Soins Palliatifs Pédiatriques, 2024.
National Hospice and Palliative Care Organization: Evidence-based Neonatal and Perinatal Palliative Care with Brian Carter MD. CE/CME credit available for counselors, nurses, physicians, and social workers.
Resolve Through Sharing Bereavement Services/Gundersen Health System webinars including "Perinatal palliative care: Planning in advance and systems support," "Comfort care for babies with life-limiting conditions: Using the neonatal advance directive," and "Life-threatening diagnosis: What do I say next?"
End-of-Life Nursing Education Consortium (ELNEC) perinatal and neonatal palliative care training module
Royal College of Midwives (UK) online training, "Perinatal palliative care: The midwives' role"
PROFESSIONAL NETWORKING
Private e-mail listserv for caregivers interested in perinatal hospice and palliative care. List began in 2006 and currently has about 300 members. Moderated by Amy Kuebelbeck. Request to join here.
Pregnancy Loss and Infant Death Alliance (PLIDA); professional networking and biennial International Conference on Perinatal and Infant Death
Perinatal Society of Australia and New Zealand (PSANZ) perinatal palliative care special interest group
MORE VIDEOS FOR CAREGIVERS
Video of Baby Amanda, diagnosed prenatally with Trisomy 18. Produced by the National Hospice and Palliative Care Moments of Life campaign.
Video about the perinatal palliative care program at Johns Hopkins Hospital.
Video for caregivers by Tammy Ruiz Ziegler RN CPLC, perinatal bereavement coordinator at Mary Washington Hospital, Fredericksburg, Virginia. Also available in 7 other languages.
Video for the Neonatal Comfort Care program at New York-Presbyterian Morgan Stanley Children's Hospital.
Panel discussion about the perinatal palliative care program at the Center for Fetal Diagnosis & Treatment at Children's Hospital of Philadelphia.
Video from Perinatal Hospice Care, Ireland. This full-length video is also available on YouTube as a series of 10 shorter videos.
Video by Perinatal Palliative Care, a network of hospitals and clinics in Australia, with more videos and information on their website.
Presentation by Elvira Parravicini MD, founder of the Neonatal Comfort Care program at New York-Presbyterian, given in Dublin in 2016.
BIRTH PLAN RESOURCES FOR CAREGIVERS
Perinatal palliative care birth plan in English and Spanish, in-house comfort care orders, and discharge comfort care orders from St. Joseph Health System's Perinatal Comfort Care Program, Orange, California. (Uploaded here with permission; see disclaimer.)
Texas Pediatric Society Committee on Fetus and Newborn perinatal palliative care birth plan, from their Perinatal Palliative Care and End-of-Life Web-Based Toolkit
University of North Carolina Center for Maternal and Fetal Health Perinatal Palliative Care Program birth plan (in English and Spanish)
Allston S, Chichester M, Sturtz WJ. Perinatal advance directives. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization, 2015 May (39):22-24.
May C. Perinatal advance care planning. Children's Project on Palliative/Hospice Services (ChiPPS) E-Journal, a project of the National Hospice and Palliative Care Organization, 2015 Feb. (38):9-10.
For more about birth plans and advance care plans, see the Birth Planning page on this site.
MATERIALS FOR PATIENTS
"A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief" by Amy Kuebelbeck and Deborah L. Davis, Ph.D. (Johns Hopkins University Press, 2011; second edition forthcoming 2023), along with their other books, including:
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"Waiting with Gabriel: A Story of Cherishing a Baby's Brief Life" (Kuebelbeck)
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"Empty Cradle, Broken Heart: Surviving the Death of Your Baby" (Davis)
"Waiting for Birth & Death: Knowing Your Baby Will Not Survive" brochure from RTS Bereavement Services/Gundersen Health System, available in English and Spanish
Caring for your baby when the future is uncertain, from Together for Short Lives and Bliss in the U.K.
Perinatal Palliative Care: Information for Parents and Carers, brochure from Oxford University Hospitals NHS Foundation Trust, 2022
REFERENCES RELEVANT TO PERINATAL HOSPICE AND PALLIATIVE CARE
Abayneh M, Rent S, Ubuane PO, Carter BS, Deribessa SJ, Kassa BB, Tekleab AM, Kukora SK. Perinatal palliative care in sub-Saharan Africa: recommendations for practice, future research, and guideline development. Front. Pediatr., 26 June 2023
Ambler J. A closer look at perinatal palliative care, eHospice, March 11, 2014.
American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care statement, Palliative Care for Children. Pediatrics 2000 Aug;106(2:)351-357. Reaffirmed 2006 and 2012.
American College of Obstetricians and Gynecologists Committee Opinion: Perinatal Palliative Care. Obstetrics & Gynecology. 2019;134(3).
American College of Obstetricians and Gynecologists and the Society of Maternal-Fetal Medicine Practice Bulletin No. 162: Prenatal Diagnostic Testing for Genetic Disorders, including a recommendation that post-diagnosis counseling "should include ... perinatal palliative care." May 2016
Martín-Ancel A, Pérez-Muñuzuri A, González-Pacheco N, Boix H, Fernández MGE, Sánchez-Redondo MD, Cernada M, Couce ML. Perinatal palliative care, Anales de Pediatría (English edition), volume 96, Issue 1, 2022, 60.e1-60.e7.
Balaguer A, Martín-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting: A review of the literature. BMC Pediatrics 2012, 12:25.
Barrington K. Guidelines to use when speaking with parents who have received a potentially life-limiting diagnosis for their fetus or child. Adapted and reprinted in Berg SF, Paulsen OG, Carter BS. Why were they in such a hurry to see her die? American Journal of Hospice & Palliative Care, June 2013; 30(4):406-408.
Bender TM. Pope Francis and Perinatal Palliative Care: Advancing the Culture of Mercy. Perspectives in Biology and Medicine. 2020;63(3):512-525.
Benini F, Congedi S, Rusalen F, Cavicchiolo ME and Lago P. Barriers to Perinatal Palliative Care Consultation. Front. Pediatr. September 2020; 8:590616.
Bennett J, Dutcher J, Snyders M. Embrace: addressing anticipatory grief and bereavement in the perinatal population: a palliative care case study. J Perinat Neonatal Nurs. 2011 Jan-Mar;25(1):72-6.
Berg SF, Paulsen OG, Carter BS. Why were they in such a hurry to see her die? American Journal of Hospice & Palliative Care, June 2013; 30(4):406-408.
Bernardes LS, Oliveira FF, Jesus RCDA, et al. Family Conferences in Prenatal Palliative Care. Journal of Palliative Medicine. June 2020. doi:10.1089/jpm.2019.0579.
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Bétrémieux P. Palliative care in perinatal medicine: Meeting the newborn child, valuing the child’s lifetime, emergency bonding. European Association for Palliative Care blog, April 11, 2016. Also available in French
Black BP, Howard E, Bakewell-Sachs S. The evolving science of care in perinatal loss. Journal of Perinatal & Neonatal Nursing, January/March 2011, Vol. 25, Issue 1.
Bollenbach LM. When end of life is near life's start. Vision, publication of the National Association of Catholic Chaplains, January/February 2014.
Boss R, Kavanaugh K., Kobler K. Prenatal and neonatal palliative care. Chapter 37 in Wolfe J, Hinds P, Sourkes B (Eds.), Textbook of Interdisciplinary Pediatric Palliative Care. Elsevier, 2011, pp. 387-401.
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Carter BS. More than medication: perinatal palliative care. Acta Paediatrica, Volume 105, Issue 11, pages 1255–1256, November 2016.
Carter BS. Neonatal and Infant Death: What Bereaved Parents Can Teach Us. Journal of Perinatology. 2007; 27:467-468.
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Catapano F, Ramacieri G, Sperti G, Corvaglia LT, Locatelli C. Evaluation of a perinatal palliative care program by SWOT analysis. Pediatr Res. Published online September 12, 2024. doi:10.1038/s41390-024-03366-2
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Côté-Arsenault D, Denney-Koelsch E, Elliott G. 'Creating a safe space': how perinatal palliative care coordinators navigate care and support for families. Int J Palliat Nurs. 2021;27(8):386-400.
Côté-Arsenault D, Denney-Koelsch EM, Mccoy TP, Kavanaugh K. African American and Latino bereaved parent health outcomes after receiving perinatal palliative care: A comparative mixed methods case study. Applied Nursing Research. Online ahead of print 25 October 2019.
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