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
Be Not Afraid, Be Not Mean
This is my article from Catholic Stand except I elaborated here about Nursing Education
In my work with newly bereaved families (in perinatal death) and in my life experiences of suffering, I have seen a strange dynamic over and over and I finally was able to see this behavior repeated enough to learn something from it.
Most of us probably consider ourselves as “nice” most of the time and always to those who are suffering. I have seen, however, some seemingly “nice” people turn harsh (nearly punitive) to those who are suffering the worst. What would cause this?
What I have come to learn is that scared people are often mean.
Yes, you might be certain that you wouldn’t do that, but if disaster befell your peer (especially someone very much like you) you might be surprised at how quickly you could react in hostility in order to convince yourself that you are “safe” from such a thing happening to you.
In her book Losing Malcolm – A Mother’s Journey Through Grief, Carol Henderson describes how her peer group of childbearing age women were so difficult and hostile in the wake of her child’s death that she finally had to remover herself completely from them. During a subsequent pregnancy, she took exercise classes with much older women because they had suffered enough to understand and support her better that her peers did. I have seen this so many times that I try to gently prepare my newly bereaved mothers of this dynamic before their re-entry into the aisles of Target where they will meet up with their peers.
In Life Touches Life – a Mother’s story of Stillbirth and Healing, Lorraine Ash also described the harsh and accusatory tone that other childbearing women hurt her with after her daughters death. They were so desperate to find some way, any way to convince themselves that the terrible fate that struck Lorraine could not — would not — strike them. They lashed out with absurd statements and questions that inferred that Lorraine had made errors that they would not be foolish enough to make. It would have taken more courage than they had to admit that she was just like them.
I think our fear is exacerbated by our societal delusion that we can control everything — that the right actions will always yield the right results. So if we see someone very much like us suffer tragedy, we grasp at the straws of figuring out what they did wrong so that we can avoid it; if we admitted that they did nothing different than we would have then we are vulnerable too.
I have found that a very effective tool to help nurses avoid being unintentionally harsh during times of infant death is to educate and prepare them to do their jobs well. Even if the situation is very hard, if the nurse feels well prepared to do a good job, then he or she does not manifest subtle hostility. I say if you ever want to see a seriously miserable human, find a Labor & Delivery nurse caring for a stillbirth case who doesn’t feel prepared.
Success is not accidental, to be good at something (especially something that you have almost no exposure to in the general world) requires education and preparation. A nurse who knows she is doing a good job can be compassionate and well applied to the task and walk out of the building knowing she helped someone at one of the most pivotal moments in life. How to do that is a column unto itself but the short answer is “Resolve Through Sharing” training through Bereavement Services in Lacrosse, Wisconsin.
How can I translate these ideas to my spiritual life?
A Biblegateway search of the RSV Catholic edition for the the term “fear not” yielded 196 results. In the last year my children and I have suffered death, injury, dangerous accidents, loss, sickness, pain, and grief. We were never told that bad things wouldn’t happen (for surely they will and we most often don’t have control over many of our circumstances) but we are told over and over that we don’t need to be afraid. God will not abandon us in our trials, and that has been my experience. Even in the worst moments, I have been given consolation both from God and from caring people.
We just learned that Blessed Pope John Paul II will be made a Saint in 2014. This is an ideal time for us to remember his constant instruction and reminder from Scripture to “be not afraid.” We might grow not just in our own experience but in how we treat others, especially those who need our compassion and kindness most.
Life and Loss 