Perinatal Palliative Care Resources
(Updated Aug 2019)
Welcome to my Perinatal Hospice/Palliative Care Resource page; this is the most efficient way I can think of to get information out the wide world. After I attend the International Childrens Palliative Care Network Conference in South Africa, I imagine I will add a lot of global resources, stay tuned.
Perinatal Hospice Resources
Perinatalhospice.org – this website is run by a colleague of mine and it is truly the gold standard online web resource for all things Perianatal Hospice. Excellent for parents and caregivers. Don’t miss this site.
To have your program added to the above site or to request to be added to the
Listserve group, contact here
Social Media for the above site:
Twitter: @perinatalhospic (no e)
Perinatal Palliative Care Program Development Tool This is a really helpful resource for hospitals early in the process of starting a Perinatal Hospice program. It costs less than $40 and worth every penny. If you feel passionately that your local hospital should start a program, it wouldn’t be out of line for you to buy this and give it to the leadership at your local hospital.
Perinatal Hospice Video English
Perinatal Hospice Video Italian
Perinatal Hospice Video Spanish
Perinatal Hospice Video French
Perinatal Hospice Video Polish
Perinatal Hospice Video Japanese
Perinatal Loss Education and family literature
Resolve Through Sharing / Bereavement Services find literature for staff education and the best patient handouts in the world (also avail in Spanish) plus classes in Bereavement Education.
RTS Resolve Through Sharing – Gunderson Health System in LaCrosse Wisconsin offers staff education on topics of death (especially perinatal death) that is considered the best available. If you want to advance the level of care your Health System offers, this is imperative. They also sell excellent handouts and other important resources…see their online catalog.
Helpful articles/videos
Children’s Project on Palliative Hospice Services – E-Journal USA
Some folks are rethinking the issue of describing T13 & 18 as universally lethal conditions
National Perinatal Assoc Position Statement on Perinatal Palliative Care
Research and excellent peer reviewed journal articles – for those of us needing to document an “Evidence Based” professional source.
Catlin, A. (2013). Perinatal Hospice Care during the Antenatal Period. Journal of Obstetric, Gynecologic and Neonatal Nursing, 1.
Kuebelbeck, A., & Davis, D. (2011). A Gift of Time Continuing Your Pregnancy When your Baby’s Life is Expected to be Brief . Baltimore: Johns Hopkins Press.
Kobler, K., & Limbo, R. (2011, January/March). Making a case” Creating a perinatal palliative care service using a perinatal bereavement program model. The Journal of Perinatal and Neonatal Nursing, 25(1), 32-41. doi:10.1097/JPN.0b013e3181fb592e
Limbo, R. K., Everson, W., & Toce, S. (2010). Blueprint for a perinatal palliative care program. (2nd). La Crosse, Wisconsin.
Limbo, R., & Kobler, K. (2016). Moments matter: Exploring the evidence of caring for grieving families and self. In B. P. Black, P. M. Wright, & R. Limbo, Perinatal and Pediatric Bereavement in Nursing and Other Health Professions (p. 345). Springer.
Limbo, R., & Wool, C. (2016, September-October). Perinatal palliative care. Journal of Obstetric, Gynecologic & Neonatal Nursing, 45(5), 611. doi:10.1016/j.jogn.2016.07.002
Limbo, R., Brandon, D., Cote-Arsenault, D., Kavanaugh, K., Kuebelbeck, A., & Wool, C. (2017, January-February). Perinatal palliative care as an essential element of childbearing choices. Nursing Outlook, 65(1), 123-125. doi:10.1016/j.outlook.2016.12.003
Mendes, J., Wool, J., & Wool, C. (2017, January). Ethical considerations in perinatal palliative care. Journal of Obstetric, Gynecologic and Neonatal Nursing, 46(3). doi:10.1016/j.jogn.2017.01.011
Parravicini, E. (2017). Neonatal Palliative Care. Current Opinions in Pediatrics, 28, 1-6.
Wool, C., Black, B., & Woods, A. B. (2016). Quality Indicators and Parental Satisfaction With Perinatal Palliative Care in the Intrapartum Setting After Diagnosis of a Life-Limiting Fetal Condition. Advances in Nursing Science, 39(4), 346-357.
Wool, C., Limbo, R., & Denney-Koelsch, E. M. (2018, Fall). “I Would Do It All Over Again”: Cherishing time and the absence of regret in continuing a pregnancy after a life-limiting diagnosis. The Journal of Clinical Ethics, 29(3), 227-236.
Links to articles by Drs Rana Limbo & Charlotte Wool
Link to Dr Cote-Arsenault’s work
Link to Dr Erin Denney-Koelsch’s work
Professional Organization for Perinatal Palliative Care providers and advocates
Pregnancy Loss Infant Death Alliance – professional organization for caregivers and advocates
International Children’s Palliative Care Network
This site has a wonderful Perinatal Palliative Care e-learning module.
Favorite Books for families:
Empty Cradle Broken Heart, Surviving the Death of your Baby here
A Gift of Time – Continuing your Pregnancy When Your Baby’s Life is Expected to be Brief Here
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Life and Loss 