Perinatal Palliative Care Resources

(Updated May 2018)

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.

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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