Palliative and Bereavement Care

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What are four ways parents can make memories at the time of their baby’s death?

  1. Make footprints, handprints, save a lock of hair.
  2. Utilize remembrance photography services (called by NICU staff) such as Now I Lay Me Down to Sleep.
  3. Dress their baby in an Angel Gown (provided by NICU staff), available from NICU Helping Hands.
  4. Be surrounded by their other family members including their other children.

 


 

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Recommendations for Palliative and Bereavement Care:  Read just the recommendations by the Workgroup on Psychosocial Support of NICU Parents, or read the full article from the December, 2015 Supplement to Journal of Perinatology.

Bibliography on Palliative Care & Bereavement:  This contains a comprehensive listing of references on palliative and bereavement care primarily in the neonatal period, compiled by the National Perinatal Association Workgroup on Recommendations for Psychosocial Support of NICU Parents.

Teardrops and Milkdrops:  Many mothers have found milk donation to be a tool to help them heal emotionally after the death of their baby. This brochure was created by the Mothers’ Milk Bank at Austin as a means of answering basic questions about lactation when bereaved, in particular, what options are available to either eliminate breast milk or donate it to a milk bank in order to help others. To find out about donating, contact your non-profit HMBANA milk bank.

About Angel Gowns:  Angel Gowns are beautiful, hand sewn bereavement gowns for babies made from donated wedding gowns.  They are available free in multiple sizes from NICU Helping Hands.

Bereavement Interventions that NICU Staff Can Offer Parents:  This document contains a list of things NICU staff can offer parents at the time of their baby’s death to provide support and help them make memories.

Pallative Birth Plan – Crouse Hospital:  This is a Birth Plan for families whose baby is not expected to survive related to antenatal diagnosis of a life-limiting condition.  It was developed by Palliative Care staff at Crouse Hospital and can serve as a template for what can be done in other hospitals.

Comfort Care Order Set:  This is a template for a palliative care order set, whether baby is cared for in a NICU or Normal Nursery setting.  Derived from Stormont-Vail HealthCare.

Guidelines for Neonatal Organ Procurement and Donation:  This provides general information about how the process for organ procurement and donation should work in a NICU/hospital.

Work sheet for Parents Experiencing Perinatal Loss – Crouse Hospital:  This document is primarily to be used with parents anticipating a loss at or around the time of their baby’s birth due to a life-limiting condition.  It was developed by Palliative Care staff at Crouse Hospital and can serve as a template for what can be done in other hospitals.

 


 

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Relevant Policy Statements by American Academy of Pediatrics:

–Noninitiation or Withdrawal of Intensive Care for High-Risk Newborns, AAP Policy Statement, 2007

–Pediatric Palliative Care and Hospice Care Commitments, Guidelines and Recommendations, AAP Policy Statement, 2013

Supporting the Family After the Death of A Child, AAP Policy Statement, 2012

NANN statement on involvement in palliative care: Palliative and End-of-Life Care for Newborns and Infants, NANN Position Statement #3063

National Association of Perinatal Social Workers:  Standards for Social Work Services in Perinatal Bereavement

Remembrance Photography by Now I Lay Me Down to Sleep:  This is a resource provided free of charge to bereaved families in many communities by volunteer photographers.

Perinatal Hospice and Palliative Care, Resources for Professionals

Training Programs in Palliative and Bereavement Care:

Education in Palliative and End-of-Life Care (EPEC)

End-of-Life Nursing Education Consortium (ELNEC) (2012)

Resolve Through Sharing, provides bereavement training for hospital staff

Nurses Grieve Too: Insights into Experiences with Perinatal Loss, produced by C. Jonas-Simpson: on Vimeo.

 


 

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Angel Gowns by Michelle, another resource for this valuable service.

Perinatal Hospice & Palliative Care is a clearinghouse of information about perinatal hospice and palliative care.  It contains a list of programs both in the U.S. and around the world.

Gunderson Health System’s Resolve Through Sharing is a not-for-profit organization providing thought leadership, and an evidence-based approach to bereavement care.


 

100px speakersSpeakers

Are you interested in having someone speak to your staff, organization, or network about best practices in palliative and bereavement care? Click on the icon to go to our Speaker’s Bureau page to learn more about these speakers.

Erika Goyer, National Perinatal Association, family advocate and bereaved parent

Sue Hall, MD, neonatologist

Carole Kenner, PhD, RN, nurse

Donna Ryan, DNP, RNC-NIC, nurse

Keira Sorrells, Founder and Executive Director, Zoe Rose Memorial Foundation and Preemie Parent Alliance