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:

Network on Facebook   

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 Czech

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:

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Empty Cradle Broken Heart, Surviving the Death of your Baby  here

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A Gift of Time – Continuing your Pregnancy When Your Baby’s Life is Expected to be Brief Here

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What (this particular) Failure Taught Me

www.usnews

I just returned from presenting at a conference and debriefing in my head if my presentations included a little too much of this and not enough of that. When I present, I include myself in the narrative since my experience is part of how I learned but I also know that isn’t about me. I hope if I went far afield, that I still spoke to someone there who needed exactly what I said.

When I explain to people how I got to be a Perinatal Bereavement Nurse, I share that when I worked in NICU, as much as I treasured the work, I knew it was not my final destination. How? In part because I was generally the worst IV placer in the unit. This past weekend, a manager who hired me into a NICU job was in the front row to hear that explanation, and if I admitted this to her, I can admit it to anyone.

NICU nurses cannulate the tiniest veins in the universe and are Zen Masters at it. Maybe it would be safe to say I was the worst of the best. I joke that numerically someone has to be the worst at everything.  I intellectually understand every tiny aspect of the skill and I have excellent fine motor coordination so how I ended up with that skill not manifesting itself well was a mystery to me for a long time. I would have loved to have been a rock-star NICU nurse in that way, but I think God didn’t let me be one for His bigger purposes.

Mostly, I think God kept me in a humble spot in the NICU so that I would know there was another plan. I also tried a number of ideas outside of the nursing world that would have taken me out of this work entirely and those failed too. I now see that I was meant to be there and to learn so that I would be ready when my real vocation was revealed.

While I was busy failing, I learned a few helpful things.

  • I learned that feeding the feeder/grower babies in the dark corners of the NICU on night shift is sacred work and not to be diminished
  • I learned to put someone else’s interests before my own even if it meant going to my coworkers and telling them my patient had one good vein and needed their expertise – the baby’s well being simply had to come first . (This was harder if I knew they already found me annoying and my request likely threw fuel on that fire)
  • In offering up my time to help them while they helped me, I learned how to function in a team instead of a lone rock-star
  • I learned that getting to the place of flourishing in your vocation could take many years (I once had a student ask how she could “become” me and I responded “you need to get old and suffer” then admitted I was mostly/sort of kidding)
  •  I learned to have humility in my later successes because I knew what it felt like to try and fail
  • I learned to let other people do what they do well and grumble less when they can’t do what I can even when they try
  • NICU / Peds nurses have probably already figured out that I learned to tape IVs with the best (it is a task often done in tandem…one person gets the cannula in the vein and holds still while the helper tapes it in)

Again I hope I hit all the high points on my stated objectives and maintained some semblance of academic decorum but I also hope that I included real-world wisdom about these situations.

When people tell me they feel uncomfortable at the sadness of it all and awkward in their feeling of inadequacy, I introduce the idea that the thing worse than loss is loss with bad care. I introduce the idea that caring for suffering people on their sacred ground is one of the most awesome opportunities our flawed selves will ever have.

 

 

RN to BSN Journey

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I went to a Hospital School 36 years ago where I later earned an RN Diploma and received a great education. A BSN at the time would have been a very difficult pursuit as I was only 17 and my parents were not convinced that making a University education possible for me was a worthy endeavor. Some of my peers endured the challenges of going back to school while working and raising children, but for a few reasons, I simply did not feel brave enough to even try.

My Perinatal Loss experience brought me opportunities to teach, write for publications and present at conferences. While my professional mentors were kind enough to not insult my level of education, I finally got to a place where I realized I was going to limit my opportunities to participate in the scholarship of my profession if I did not further my education.

So, many years after graduating from Union Memorial Hospital School of Nursing, I began the BSN course at the University of Mary Washington. Pivotal in the decision was my newlywed husband’s offer to fund my education. I had had children in college since 2007 and couldn’t imagine paying more tuition than I was already paying. His generosity tipped the scales in my decision making process.

Before I started my return, I was afraid. What I was afraid of might surprise you. I was, of course, afraid that I was painfully behind in needed tech savvy, that I would struggle through math class, and needing to learn to write according to APA guidelines would bring me to despair but there was more.

I was afraid that I was already so well informed that this whole thing would be a waste and I would learn nothing. Perhaps bigger than that, I was also deeply, internally afraid that I would learn really useful helpful things which would mean that I had been working without those helpful tools in my knowledge base for a long time and that might feel humiliating.

Well, I have completed 11 classes and have 4 to go – what do I think about all this now?

I’m very proud of myself for taking on the challenge. No one would have faulted me of I chose not to do it. My husband retired and I could have joined him shortly with no harm and no foul and the fact that I didn’t take that path gives me a sense of accomplishment. It doesn’t hurt that THE VERY DAY I announced on Facebook that I was going back to school, a professional mentor invited me to coauthor a piece for a respected professional journal. That was a bit of immediate gratification that few students get and I was quite happy with it.

The truth is that I have learned things I didn’t know before, but as I learned, I didn’t feel humiliated, I felt fortunate.  I was fortunate enough to be a rare person these days who got to combine the wisdom of the ages of the old style of Nursing Education and the new waves of 21st Century Information Age of Nursing Education. 36 years ago I wore a cap and white pantyhose and learned Nursing “old school” and today I confer with colleagues across the globe and use computer networking to change the care of dying babies on planet earth – am I not the most fortunate nurse ever?

Another truth is that my old school peers and todays newbies each have strengths and weaknesses that we would be wise to recognize. I couldn’t believe it one day when I found myself telling an age-peer that she simple could not go any further with her project without doing a thorough internet literature review. My younger colleagues would do well to devote themselves to making sure that they can write grammatically correct sentences. No one in a position of completing a Bachelors degree should submit sentence fragments in a formal assignment.

Tomorrow I leave for Africa to teach a workshop and learn from amazing people. I hope to meet the Ethicist from the WHO in Geneva and I harbor secret hopes that I find some reason to buy a plane ticket to Geneva. I love my adventures, academic and otherwise…they make me feel capable and mighty. I encourage you to face whatever fears might beholding you back from whatever – you may just learn something.