Professional Collaboration in the Development of a Perinatal Palliative Care Program

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1 Professional Collaboration in the Development of a Perinatal Palliative Care Program Creating a Community of Compassion Ann Coyle RNC Michelle Kelly, MD

2 Starting Out Gathering information from different departments OB NICU Labor & Delivery MFM Previous Parents

3 Starting Out Virtua created Manager of Perinatal Bereavement position Gathered interested people from each specialty Dr. Librizzi MFM Dr. Zehnder, Dr. McCrosson OB Dr. Kelly NICU Linda Levy, NNP NICU Terry O Malley NICU Discharge Planner NICU nurses Social Work

4 Starting Out Initially planned for support for end of life issues in NICU. As information gathered, realized this should expand to include prenatal visits and increased support for community OB s and MFM.

5 Looking Outside Virtua Parent Advisory Board Talking to other NICU s Attended conferences Literature searches

6 Staff Education One day class on Sensitivity and Loss Open to all perinatal caregivers Nurses, office staff, social work attended Office visits to community OB offices 4 Tips on How to Keep Patients in Your Practice

7 Staff Education OB Offices 4 Tips on How to Keep Patients in Your Practice Don t make them wait in waiting room with pregnant women Send a card or call family after loss Mention the baby by name Mark the chart to indicate loss for all involved with patient

8 Staff Education Monday Mourning Minutes Weekly tidbits of information Multiple signs hung around offices/hospital Best read on bathroom doors! Distributed to NICU/SCN, L&D, MFM, High Risk OB, OB offices(if pertinent), Center For Women, Mother/Baby units

9 Monday Mourning Minute

10 Monday Mourning Minute

11 Palliative Care What does this entail? Prenatal Consults Support in Labor Support after Delivery Support after Discharge Home Ongoing Support

12 Care Plan Before visit, review medical record and talk to MFM and/or OB Involves meeting with parents, doctor, and bereavement specialist Meet in private space, small table, close enough to support parents Lots of tissues!

13 Prenatal Consult Meeting with the parents Open-ended questions Review medical facts, answer questions Review options with parents Make care plan LISTEN! BE FLEXIBLE!

14 Care Plan Create Care Plan Parents wishes for Labor and Delivery Who attends delivery NICU vs. staying with the parents Extent of medical intervention Memory building Every plan is different because every family is different

15 Interdepartmental Communication Communication between OB MFM Labor and Delivery NICU Palliative Care Team Parents

16 Care Plan

17 Care Plan

18 Memory Building Pictures Personal camera/cell phone Hospital camera with memory card and prints Professional pictures Now I Lay Me Down To Sleep Keepsakes Memory box HOPING Bear (donated by parents or organizations)

19 Memory Building Memory Boxes anything that touched the baby Footprints Blessing card Blanket, hat, clothes Angel Gowns (made from donated wedding dresses and volunteer seamstresses) Lock of hair Measuring tape Anything parents request Lip prints Hand print on Christmas ball

20 Donations Teddy Bears Given to all losses Books For smaller babies in NICU Cuddle Cot (2 donated 1 at each location) Sunshine Bags Made by loss Mom for Moms who suffer a loss (personal items, snacks, hand written note)

21 Cuddle Cot Designed so baby can stay with Mom Cooling bed to prevent decomposition First used 2015, very well received

22 First Few Cases - Pitfalls First case Before team fully established Trisomy 13, undiagnosed prenatally Baby received some intensive level care Turned out to be OK since it gave family time to come to terms with diagnosis Lots of fear, but no anger Didn t want to be alone with baby when dying Baby passed peacefully in parents arms (with SCN nurse and Ann present as support)

23 Pitfalls Information about baby s condition not communicated to parents by OB prior to consultation Parents did not realize baby s condition likely fatal. Solution: planning consult stopped arranged to meet with parents at MFM appt (3 days later) At appt. no FHT detected Ann there for support

24 Pitfalls Diagnosis: anencephaly Mother 18 year old, G1P0 Bring as many people as you want to delivery 20+ people in delivery, including 5 young children party atmosphere with family while Mom in C-section Solution: had most of family step out, few people at a time come in to be with parents Solution: gave parents time alone with baby

25 Pitfalls Mother prepared by OB for multiple malformations, poor outcome, possibly fatal malformations Delivery: healthy appearing baby Admitted to MBU Now 18 months old Some delays, cognitive delay Club feet

26 Ongoing Developments Support for parents CaboCreme to dry mother s breast milk Information about funeral homes Working with Gift Of Life Staff education 1 successful donation heart valves Financial support for funeral costs TEARS Foundation

27 Ongoing Developments Rainbow Babies Successful pregnancy after a loss Support group during pregnancy Donations of blankets Magnets to mark room

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