Perinatal Hospice Resources

I will be interviewed on EWTN radio on Dec 17th on the topic of Perinatal Hospice. I will mention some resources very quickly then give the address of this blog where people can dig deeper.

I mention in this blog that I never intended this to be a journal but rather a book with short chapters that  can change if I learn something new.

Perinatal Loss Handouts and Education 

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 catalogue.

Perinatal Hospice Resources

Perinatalhospice.org – the gold standard online web resource for all things Perianatal Hospice. Excellent for parents and caregivers. Don’t miss this site.

BluePrint for Perinatal Palliative Care Program This is a really helpful resource for hospitals early in the process of starting a Perinatal Hospice program. It isnt that expensive. If you feel passionately that your local hospital should start a program, it wouldnt be out of line for you to buy this and give it to the leadership at your local hospital.

Perinatal Hospice Video (English)   Go to Perinatal Hospice web portal for links to 6 other languages

National Perinatal Assoc Position Statement on Perinatal Palliative Care

Article on topic by nurse leaders with links to research

Pregnancy Loss Infant Death Alliance – professional organization for caregivers and advocates

Prenatal Partners for Life – parent support ministry

 

Favorite Books for families:

images

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

51fRCi+2QkL._SX331_BO1,204,203,200_-1

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

Is “Perinatal Hospice” too big of a concept? What if…

imgres

What if you didn’t call it “Perinatal Hospice”?

What if you offered a “Predelivery Conference” for women / families with complex delivery needs?

Perhaps your leadership could be enticed to make the needed resources necessary if they thought higher satisfaction scores might come from complex cases.

Maybe the Maternal Medicine MD would clue you into cases where parents were dealing with palliative care situations.

What might you offer in these meetings? (I would argue though, that your mere presence and opportunity to meet some of the team and see the unit through the eyes of parents with a special need would be huge)

  • You could discuss their hopes and fears as well as what your unit could provide and what you could not. (I have been able to really help a few families by discussing the smallest things like having a camera available or reserving a private space for their family to wait).

 

  • You could confirm plans already discussed with Peds/ NICU staff or learn who needs a NICU consult (Learning of a disconnect in the expectations/plans of different departments ahead of time can avert disaster in the moment).

 

  • You could host/teach/advocate/refer a private birth class where thee palliative care situation was respected and not have them in groups where they have to suffer with whiney folks who aren’t in their situation).

 

  • Just offering a private tour of L&D / NICU / Mother Baby with the focus on their palliative care situation could be a huge help.

 

  • Have a discussion of getting a “Now I Lay Me Down to Sleep” vs family friend photog vs staff taking photos (Encourage family to have a video camera with sound ready – I’ve see babes who were expected to die quickly make beautiful sounds that resulted in me running down the hall to get a video camera with the intensity of a crazy person).

 

  • Discuss the inclusion of their clergy vs Hospital Pastoral Care – let them know they are welcome to practice their faith in the moment (I once worked in a NICU for 4 years and never saw a Pastor/Priest/Cleric visit ever – what message were we giving to families? I think we did them a disservice.)

 

  • Discuss the inclusion (or not) of siblings in the brief life of the baby. Within the limitations of patient confidentiality, share stories of other families and how including siblings was a benefit/challenge. The moments in the delivery room may be their only chance to all be together and get a photo together.

I recently had a palliative care baby born to a lady who I was only able to have a single phone call with prior to the birth and that one call made all the difference in the world.

Maybe in time the comfort you / your unit / your managers find with pre-delivery meetings, you will fell ready and comfortable branching out a little more and developing a comprehensive program that you would feel comfortable calling a “Perinatal Hospice” but why not start small?