Starting a perinatal hospice & palliative care program
Many programs have started with the inspiration of one person — perhaps a medical professional who has seen firsthand the need for this kind of support, or perhaps a parent who lived the experience and wants to ensure that other parents don't walk this path alone. Most programs are based in hospitals or clinics, some are hospice-based, and a few are faith-based or independent. See the list of programs on this site; many have websites or brochures that may be helpful. See also the Resources for caregivers page for many professional resources and journal articles.
One professional how-to resource for starting a program is the Perinatal Palliative Care Program Toolkit from Gundersen Health System's Resolve Through Sharing/Bereavement Services.
Recently published books packed with information for medical professionals:
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Handbook of Perinatal and Neonatal Palliative Care (Springer, 2020)
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Perinatal Palliative Care: A Clinical Guide (Springer, 2020)
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Neonatal Palliative Care for Nurses (Springer, 2020)
Other professional resources include "Building an interprofessional perinatal palliative care team," published in NeoReviews, and the Perinatal Palliative Care and End-of-Life Web-Based Toolkit from the Texas Pediatric Society Committee on Fetus and Newborn. See also the framework for perinatal palliative care published by the British Association of Perinatal Medicine and its accompanying report. Online education related to perinatal hospice and palliative care is available from the Gundersen Health System, the End-of-Life Nursing Education Consortium, and certification in perinatal loss care (CPLC) from the Hospice and Palliative Nurses Association. A free online perinatal palliative care training course is available from the International Children's Palliative Care Network in English as well as in French, in collaboration with La Société Française de Soins Palliatifs Pédiatriques.
See also the 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.
Also available for reference are 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.
If you are a medical professional interested in networking and sharing information, you are welcome to join the private perinatal hospice e-mail list.
If you are interested in lending your support to existing programs or to medical professionals who would like to start one, a list of ideas is here.
Feel free also to follow perinatal hospice and palliative care news on Facebook and X.
